My mind is full of cancer these days. My inbox is full of messages from others who have the same cancer I do, and I actually look forward to reading them. I sometimes go off by myself to read them in private, because they are not for everyone in my family, they are only pertinent to me and they may contain a message, a chip of information, that could save my life. You never know. I am disappointed if a day goes by without finding at least one message with the adress ACCOI - Adenoid Cystic Carcinoma Organization International. If people knew this they would think I was obsessed with my cancer. Which I might be.
I am not especially anxious these days - I have moved through the initial terror of the diagnosis, the stark realization that I will actually die, perhaps much sooner than I had expected - or not expected, to be more precise. I am far beyond the days when I hated pressing the elevator button for the 7th floor of the outpatient building because I believed that was tantamount to announcing loudly, "I have head and neck cancer." I don't hide my patient ID card in the back of my wallet anymore so I won't accidentally see it when I am looking for something else and be reminded of the insidious tumor growing just beneath my unsuspecting eye. I am in a different place now.
Now I read about Adenoid Cystic Carcinoma every chance I get. I take my Ipad everywhere with me and look up a scholarly article or two while the pasta is cooking, or I reread (again) the FAQ's on the ACCRF site during the commercials. Although I am no longer spooked by my hospital ID card, I notice I am careful to bookmark those articles which say hopeful things and avoid returning to the ones that use terms like "dismal outcome" and "relentless course." I prefer the ones which emphasize the prognosticatory value of histologic grade, (mine is not so bad) rather than the ones that discuss outcome based upon tumor stage (mine is not so good.) For someone who does not believe in the power of positive thinking, I go pretty far out of my way not to encounter negative information.
And I am not sure why I am always reading about, thinking about, having to ration how much I talk about this disease. What exactly is its hold on me? Why does my obsession with it seem almost like a fascination, an infatuation sometimes? I am not sure. Perhaps it is just because it was such a huge part of the past year's experience, because it is now part of who I am. Perhaps it is because it has the quality of a public secret - everyone knows about it, but no one really shares the experience with me. Secrets always have a certain power. Maybe I can't forget it because not one day has gone by in 10 months that I have not touched the place near my eye and felt something alien there. Would I miss it if it were gone?
I don't know. Maybe I am like a grieving person - not able to forget the source of my grief until enough time has gone by. Maybe I am actually more anxious than I think I am and I am constantly trying to assuage my fears. Maybe I am just intensely curious - I have always read immoderately about any new subject which has captured my attention. Two years ago I bought every adoption book on the market, devoured them and then let them gather dust on the shelf. So perhaps it's nothing more than a new interest. Who can say? Not me.
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