Saturday, November 23, 2013

touche, abnormalities, touche


Not for pity. Not for sympathy. Not for applause. Yet not for nothing, I hope.


What follows are some random thoughts that have come to me which I supposed might be of interest to somebody besides myself. They are about terminal disease but set down here with far from morbid intentions; in fact, more the opposite is true.  It’s about dying but with a view to casting light from an as-it-occurs-to-me, first-person perspective.  But not an auto-eulogy nor self-styled elegy.  Morbid?  Yes, by definition, I would say; but hopefully not to the point of moroseness.

Expect perfect prose, expect to be left expecting . . . long since my advice to myself—it works pretty well, even if not altogether satisfying. Ditto perfect cohesion within journal entries or all-cylinder cognition throughout. These imperfections are the reasonable result of a crowded mind and crowding brain. I hope they are tolerable. 


For 17 years, I have been dealing a brain tumor.  At first, a benign sort whose symptoms were more or less kept in check by meds—anticonvulsants and happy-pills, mostly.  Over the years, the tumor would try to expand its horizons.  Two or three times, I spent weeks in bed among other unfortunate reactions to the tumor’s growth.  The more severe symptoms would eventually subside, and on we’d go.  Until the next flare-up, the next cause for concern. 

About 7 years back, I had a biopsy and we discovered a small upgrade in the tumor—it was beginning to show its ornery side, so we radiated.  Tumor stabilized, and on we went.  A few years later, I began consistently having seizures once or twice a month which led to chemotherapy for a year.  Tumor ostensibly stabilized and on we went . . . for a couple of months. But in the spring of 2013, my body went wonky again: short breath, speeding and/or snailing heart rate, loss of facial control and voice.  Two ER visits later and it was back under the biopsy drill (fancy new variety), back on my back beneath the radiation machine, back on chemo infusion (fancy new variety), back on MRI and symptom surveillance.  Because the tumor had reached grade four: glioblastoma multiform, which, barring miracle or misdiagnosis, is just about all she wrote—the final chapter still in draft form.

Early Summer,  2013

Day one of coming to terms with your truncated life expectancy is not the day you discover the new the tumors or hear the pathology report, rather it’s the day you double check your research and find that you misread months as years. Then it begins in earnest.


Here's earnest for you: since this "coming to terms" I have taken two naps and played on my iPad.

[additional entries queued,will follow with relative frequency until caught up] 


  1. I am glad you are writing about this insane journey and sharing what as much as you do. It helps those who read it, I believe, well, it helps me - and in unexpected ways. Just now, it took me completely outside of myself, where for some reason, I had become stuck.
    lymi (we pronounce it "lie me" and it means "love you mean it", and it is something my dad started with me and Michael).

  2. Thanks, M, you've been kind to me for so many years, in so many ways; so i'm delighted to have you along, one wants such company on insane journeys.

  3. I hate that this is your journey, I hate this is your diagnosis, I hate this is happening. But I love that we who love you are not shut out of it. I'm following, too.