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Wednesday, July 10, 2013

Advice, blood and brains

A few years ago, the health of the aged mother of a friend of mine was deteriorating rapidly.

   There was nothing odd about this. It was part of the perfectly natural cycle that starts at birth and ends with death. The body is the physical vessel for the survival of the human gene, and the time comes when it's best from the point of view of evolution to discard the beat-up old shell and start all over again with a brand-new body.

   She was dying. It was at this point that cancer was detected in her body, and it was rapidly invading every organ. "Best to make her as comfortable as possible," said her GP, and see how things go.

   It was sound advice. My friend did not worry the old lady by telling her about the cancer, and she was unaware of its existence in her body. They did things together and enjoyed the time as much as possible doing a few bucket-list things as the cancer spread.

   Then an entirely unexpected thing happened. Blood tests, which were confirming the steady growth of the cancer, started to give contrary readings. The cancer retreated, and before long disappeared from her system altogether.

   They continued to do things together for two years, until her mother died of something quite different and what would be expected in old age. There was never any further evidence of the cancer that should have taken her life earlier.

   This phenomenon is far from unknown to medical science. It happens sometimes, but there was no apparent reason why it had done so in this case.

   My friend might have changed her mother's diet, or prayed daily for it to go, or waved a wand over her when she was asleep, or made a pact with some strange deity, and the retreat of the cancer would have occurred, but she did none of these. If she had danced naked in the moonlight, brought in a voodoo man or ritually slaughtered chickens, then the cure would have been ascribed to the method, instead of the simple reason that it sometimes just goes away.

   The reason I mention this is the rash of advice and treatments I've been offered since wide publicity was given to my case for other reasons. Some of this was sane, sensible advice about what had been used by others in the case of their or a relative's cancer. I appreciated knowing about it and comparing it with the mountain of information Tracey and I had compiled over the years since we've been dealing with my brain tumour.

   Much of it, well-meaning as it is, has no relevance in my case, or isn't something we aren't already doing, adapted to my circumstances.

   What many offering catch-all treatments don't understand is that what applies to cancers of the body don't always apply to those of the brain. There's what's known as the blood-brain barrier, a biological evolutionary strategy that has served life well by preventing the blood from carrying many toxins to the brain.

   The disadvantage is that treatments which may work effectively for other parts of the body in restraining cancers are simply irrelevant for brain tumours, because the active agents, the things that make treatment work for those other cancers, just don't get through to the brain.

   That's why treatments for brain tumours are often different. It's also why some great ideas for other cancers aren't on the menu.

   Treatments like Avastin bypass the blood-brain barrier and have their effect, for better or worse. (Ironically, Avastin is not on the list of drugs government-subsidised for brain tumours, but is for many others such as colon cancer. Figure that out.)

   As well, many suggested treatments don't take into account that all sorts of factors affect their success for brain tumours. Age, prior medical history, location of the tumour, stage detected and diagnosed – there's a stack of variables that make a treatment positive for one person, and for another, a waste of time and money.

   Suggestions about rigid diets may be negative when added to current treatments. There's a vast balancing act in dealing with each case. One size just doesn't fit all, however ardently the person putting them up believes they have the solution for me. Often they won't accept the possibility of difference. "This worked for X. It will work for you. Try it!"

   As if we don't know about that treatment and haven't factored it into our particular equation. Mention it to us by all means, but don't get upset if we know it doesn't apply in my case, or that we know we're using its basic principles anyway.

   One way or another, this tumour will probably be the chief cause of my death; sooner, it seems, rather than later. Please don't accuse us of closing our minds, or at worst, insulting our intelligence by offering snake-oil treatments in dealing with our particular variation on the brain tumour theme. We can distinguish between them and good advice, even if we already know about that advice. 

   We know the score. We know the documented history of this disease. We can separate snake-oil from sound advice.

   We know there are unknowns. We respect that. We also know fairly precisely what is happening inside me, and better than anyone else. We know about probability and how chances of life extension at acceptable quality can be improved or wrecked.

   We are aware.
Dedicated to Ros and Dave, who have been dealing with their case of MS for many years, and Ros's treatment for decades of her mother's case before that, and who are continually being offered snake-oil as if they don't have a clue about what they're dealing with!


  1. I guess acceptance of the reality of any situation in our lives is what counts, Denis. We can try to change or improve that reality and to subsequently accept any such gains or losses as our new reality. I know it is easier, sometimes, to embrace the fantasies of our minds ... to dream about sudden legacies, cures, divine plans, or ideal personal relationships. It is a question, really, of whether we want to live a life of integrity - albeit sometimes brutal - or to live a self-deceptive illusion for as long as it lasts. I think you are travelling well. PS: I note reference to the philosophy of 'The Selfish Gene' which, along with Robert Ardrey's four books on the genetic imperative, changed my take on life some 40 years ago.

    1. Well said, Bob. It remains to be seen how well I am travelling. The multiplier effect is now strongly in train. If we are to avoid self-delusion then it must be said that the complications are adding up daily.

      You are right about The Selfish Gene. No other explanation makes this much sense. For all sorts of reasons it is evolutionarily better to have a Use-By date built into the organism, and the reproductive capacity of human cells proves it. It's a terrible irony that only cancers by-pass this process, but even more ironically, by killing their hosts they seal their own doom.

  2. My sister died of glioblastoma. I know just what you mean. The offers of snake oil ranged from the well-meaning ("Have you tried vitamins?") to the wild-eyed ("The medical establishment doesn't *want* to cure it! It's a cash cow for them!")

    I enjoy your blog very much... you're a terrific writer.

  3. Just found this. So very sad to know. If not for Denis I would never have completed a university degree as a mature-age student. Thankyou Denis, thankyou a thousand times.

  4. Denis, I really appreciated the 'we' you used in this post - thank you for thinking (but how could you not?) of expressing yourself in that way. It's a small thing, compared to what you are facing, but often goes unacknowledged.


  5. I was going to comment this on another post, but it seems more fitting here.
    I started reading your blog beacuse I came by chance to some article written about it and it tickled my cursiosity because you remind me of a friend of mine: He was diagnosed with leukemia at the age of 16. He could have been bitter about it, becase who wants to spend their teenage years doing treatments? But he simply put some humor to it (a very dark kind, one of the things we shared) and lived life to it's fullest.
    He once told me that it's not that much the disease that kills a person, it's the news.
    Well, I'd love to tell you that he won, but sadly he did decided it was enough 16 years later, and he passed away novermber of last year.
    Well, lets go back to what I first wanted to tell you: You two share this unique view on life, you got this horrible news and instead of simply giving into it, you made something of it and it's what I admired of him and what I admire of you.
    I'd love to tell you something like "they'll find a cure soon" but I've always been a very realistic person, which doesn't mean I'm not optimmistic.
    So, keep your attitude up, you are an example =)


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