Thursday, March 22, 2012

What's the protocol for this?

I'd like to say that I haven't posted lately because I've been very busy but that's only a half-truth.  I did have a lot on my plate, but I wasn't picking at that, either.  Instead I was staring at my plate, wondering why it kept piling up and how much longer I'd have to wait before it magically resolved itself.  It didn't.

I used to wonder if this kind of self-destructive behavior was rooted in questions of self-worth; if I was trying to sabotage the good in my life because I didn't feel that I deserved it.  I'm not sure it's fair to pin it all to my disease either.  The truth probably lies somewhere in between, as with most things.  My last round of chemo hit me harder than the previous (though I think that has more to do with how hard I was pushing myself than my body simply reacting poorly) and I remained mired in a fog for weeks.  I wanted to work but I couldn't.  I felt physically unable to put words on the page and when I forced myself, the result was terrible and embarrassing.  Nothing I'd want anyone to actually read, never mind purchase with their hard-earned money.  Or, you know, department funding.  Whatever.  Thankfully my boss is patient and understanding enough to help me find solutions rather than point out faults, and, when necessary, light a fire under my ass.  I've found my voice again and cleaned off most of my plate, so I felt it was time to check in.

I'm faced with a new question this morning.  The president of the company had another sort of cancer when he was younger and feels that this is a point of connection between us, which is fine.  His variety wasn't quite the same as what I had but I'm not going to turn down sympathy and compassion from the man in the big chair.  This morning he sent me an e-mail on a new "cure" for brain cancer.  It's a sort of supplement called "essiac tea."  Well, he's the thing.  Essiac tea does not cure any cancer (surprise!).  In scientific trials it was shown to have no effect on cancer whatsoever until you get to large enough doses... at which point it may accelerate tumor growth or flat out kill the patient.  The FDA has described it as a "fake cancer cure" and Sloan-Kettering has advised patients to "avoid" it.  So when my president says, "it couldn't hurt," how do I respond?

I thank him politely, promise I'll look into it (which I have), and hope he never, ever mentions it again. 

Anyone else have any similar experiences?


  1. You could put the onerous on your oncologist and tell your boss that you discussed it with your oncologist (which you can do) and he does not think it is wise to be taking essiac tea while you are on chemotherapy. Your boss won't want to contradict your physician. I see my husband with that chemo fog for at least 2 weeks after the chemo and then it seems to clear.

    1. I think I just might do that. He hasn't brought it up yet but he knows that I tend to defer to my doctor. Good suggestion.

  2. Hi Knightly,
    This is joan (jerseyjbk from brain cancer forum). I have a friend I haven't seen in years who was telling me about several different alternative treatments for my husband Duke.I can,t remember what they were right now but when I looked into them, in order to get the magic information to cure Duke I had to buy their book. I promise you if I ever had the cure I would not charge you for the information to obtain said cure.She also recommended the Hallelujah diet, what ever the heck that is.
    I don't buy any of that garbage. Duke did all the right things, like quitting smoking 15 years ago, going for regular colon and prostrate screenings etc etc, and look what that got him, a brain tumor!
    He didn't have a chance from the start with this thing.
    I hope you being a younger man,less damage, you will have a fighting chance for a cure. I'm pulling for you buddy,

    1. Good to hear from you, Joan.

      It seems to me that anyone who comes up with an actual cure is going to be so famous they can afford to give it away for free. As for the people who support them, manufacture the stuff, their staff, etc., well... let's cross that bridge when we come to it. First things first, cure. I'll hold you to that promise. :)

      The Hallelujah diet sounds kind of like my hypothetical anti-cancer taco diet: you eat a lot of tacos and if it cures you, "Hallelujah!"

      So I'm going to keep eating delicious tacos, and I'm going to keep listening to my NO's advice, and I'm going to keep fighting. And should all that fail me, then, well... that sucks.

  3. I had a similar experience. Our CEO's wife had done some research into cancel and had found some diet that supposedly 'cures' cancer. It also involved buying a $500 juice extractor. I just told him I'd research it. When he asked me about it later, I told him I had researched it but it didn't seem appropriate given my circumstances although there were a lot of positive things about it (in this case drinking extracts of vegetables was not a bad thing). He didn't press the issue.

    My aunt discovered a cure that involved a macrobiotic consultation from some hippy commmune in Boston. She asks me about it every time we speak. I'm starting to run out of excuses. I just keep telling her I'm changing my eating habits and removing as much processed food as possible (Trader Joe's doesn't count as processed does it?) and that keeps her at bay.

    Good luck.

    1. Must be rough with your aunt. It sounds like she wants the best for you but at some point, you're the one with cancer and you really don't need her haranguing you over something that will, at its very best, do nothing. I wish you continued strength in dealing with her, on top of everything else, but encourage you to find a gentle and polite way to tell her to mind her own business.