Sunday 28 February 2010

Barbaric Alchemy

The eye of the hurricane is a very beguiling* place (*I had to look that word up in the Dutch - English translator. Only the Dutch version, verleidelijk, came to mind. Just shows that I've been living here too long). Things are almost 'normal' at the moment. I'm working more or less full time, Kay is at school more or less full time. She is playing hockey and horse riding, etc, etc. Almost like real life.

However, 'almost' is the most significant word is the last sentence. In normal life one doesn't have conversations about Total Body Irradiation, etc, whereas in this Neverland in which we live such conversations seem almost normal. And that's the odd thing about the last week. We have been to the hospital twice and we have discussed the ins & outs of a Bone Marrow Transplant, we have heard about and understood the horrors of Conditioning, Kay has been milked for blood, we have blithely chatted with the Radiologist whilst stood in the radiotherapy chamber and then we have gone home, had lunch and gone back to work/school/'normal' life. This is SUCH a BIZZARE situation.

However, its not going to last much longer. The horrors of the situation are going to return with a vengence, that's clear. And it's very scary. So the only way to deal with that is to throw oneself into 'normal' life with a vengence equal and opposite to that which is coming our way. And that is clearly what Kay is doing, what I am doing and, I suppose, Marion too. In the last six years Verum has been the biggest bane of my life. At the moment it has become the biggest, best and most welcome distraction. Weird. Nothing about Verum has particularly changed to elicit such a shift in my point of view, so it must be me that's changed. Evidence of just how much one's perspective can be changed and what consequences can flow from nothing more than an altered mindset. The power of thought, I suppose.

The thing that I find most scary at the moment is the idea of sitting my precious daughter at the wrong end of a defocussed gamma ray generator for an hour, during which the generator will be turned on for 30 minutes, irradiating her from head to foot. As a physicist, this seems to me to be an especially bad idea. Side effects will include nausea, damage/destroyed mucus membranes, etc, and can include cataracts (like cooking an egg in a microwave, I guess), hormonal problems and an increased risk of secondary cancers in the future. This seems to me to be such barbaric medicine: smash everything to pieces and see if we can rebuild a person from the remains.

It's definitely true that, if we were not already there, we have now entered into the dark side of medicine where treatments are essentially nothing more than barbaric alchemy. The first time that Kay had leukemia it struck me that the treatment was really an alchemic process, although in these modern times we use modern words, we call it a "protocol". It interests me greatly that so much of modern medical technology takes the form of protocols. Medics have learnt through the years that by combining treatment A with treatment B with drug C in certain amounts and ratios and in a certain sequence that sometimes a positive result is achieved. Like turning lead into gold maybe?

Again, as a physicist and computer guy this sounds like poor science to me: dip the patient into chemical soup and bombard them with gamma rays. Then inject someone else's stem cells into their body and cook for 4 - 6 months. Open oven and, cross fingers, a cured person will emerge (with a new blood group and a reset immune system). The crudity of it is astonishing. And frightening. And indicative that the medics don't really have much of a grip on what is going on here. They have no targeted, specific techniques by which they can address the problem, the tumour, at source.

Another thing is that most of the drugs involved in this alchemy were invented in the 50's & 60's. I keep looking up the drugs that Kay gets to find that eg Vincristine was invented (discovered, actually) in the 50's, etc. Certainly since Kay first had leukemia not much has changed on the treatment side, although new technology has merged in the diagnostic side, eg the Minimum Residual Disease measure. As someone who lives in the high tech and rapidly developing world of computers and software it feels to me that medical technology creeps along at a snails pace and that, although we have gone very far with some very subtle things, for instance the decoding of the human genome, we're still at a medieval stage when it comes to treating a range of common problems/diseases.

When I think that my iPhone includes chips that have been massed produced using techology that works on the 25 nanometre scale, that is a physical expression of the exact sciences of physics, chemistry and mathematics made it possible and that there are factories the world over who are routinely stamping out millions of chips per year at this or lower scales, it seems to me that medical technology has a long way to go by comparison. I hope that the day will soon come when medics will be able to cure a given disease using specific, targeted treatments. It would be wonderful if they could simply inject Kay with nano-machines that were able to specifically identify her faulty pre-pre-B cells, kill off all these cells whilst stimulating her stem cells to manufacture new pre-pre-B's without the genetic corruption that is causing all her problems.

Well, dream on. I suppose I shouldn't moan. At least there is a treatment for Kay's condition, even if it is barbaric alchemy.

3 comments:

  1. Wow, written the February the 28th and now March the 4th nobody did post a comment!
    I myself read your article over and over again. And even now I cannot find the wright words to support you. The situation is so difficult and bizarre that it is impossible to explain in words or even to understand. It is simple a situation you have to endure. This is exactly what you are doing. By finding distraction in your work, school, sports, daily life. Things that in the past were perhaps not so nice to do but now they give you just what you need, nl not having to think about what is yet to come.
    Rob, it is not moaning, it is simply wishing things were different!
    And how we wish that too!
    Wish you all the strength you need and a big hugh for Kay!
    Viviane

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  2. Thanks, Viviane

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  3. I vividly remember watching a TV documentary showing a child going through what Kay is soon to endure. I was amazed by his acceptance of the situation and the determination to get well. It has stayed with me for a long time. If strength of spirit is anything to go by, Kay will display similar courage. Enjoy the 'normality' and recharge your batteries for the next chapter.

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