Monday, December 31, 2007
Year(s) in Review
Methadone - more and more, nothing but a desperate bid to stave off the pain - sits between me and the keyboard, the blog
of substance, the pages of a book, the deep conversation. Sits? More like hunkers. Methadone hunkers, and I sleep. Now, Monday
morning finds me awake, and I take a stab at what I hope will be a moment's lucidity...
6:40 am pst
I will be dying soon; when is anybody's guess. This sucks, of course, totally. But I am content. I look at my life and am
satisfied - and that's saying a lot. A definition of successful, even. I count myself lucky. Blessed. Full. Rich.
My family speaks for itself. Something I never even thought I would, or could, have. I found my soul mate - not all of us
can say that - I found my soul mate, and she dragged me kicking and screaming into marriage and fatherhood. Kicking and screaming,
and I am SO glad that she did, for my children are the center of my world, a miracle of noise and laughter and mayhem of which
I am so proud and - every day - in breathless amazement.
From my immediate family I move out to my extended family, and friends, and community. Multiple silver linings here...cancer
has brought me so much closer to so many, many people, in such amazing and vital ways. And not just me. Simply LOOK at the
community that surrounds us! The outpouring of love from our local and international community makes my head swim, daily,
and this over two years - almost three - since the outpouring began. It makes my head swim AND fills me with hope:
My family will be carried and sustained.
Professionally, I'm content. I'm especially proud of my most recent work at Emory, where I helped Dr. David Rye identify the
gene responsible for Restless Legs Syndrome - research which landed us an article in The New England Journal of Medicine.
Cancer, chemo, and disability derailed my degree plans and promised to leave me very bitter in that, the academic sphere of
my life, but only briefly - I've a diploma hanging here, a master of science in public health, an honor bestowed on me by
the Dean of Rollins and its trustees. (Thank you to everyone - as always, it started with Tamara - who helped get that ball
Family, friends, community, career and, finally, activism...could I be any prouder of what the intersex community has accomplished
in the past decade, and the role I played therein? By putting ourselves out there, making ourselves accessible, and talking
to countless reporters, undergraduates, and medical students and professionals (and making, arguably, one too many documentaries...),
Tamara and I helped to change the world.
I'm content, I suppose, despite what can only be described as a raw deal, because, in retrospect, I discover I have lived
a meaningful life. I have to confess, this wasn't something I planned...it just sort of, well, happened. But it did, leaving
me and, I like to think, all of you, the richer.
Happy Birthday to You!
Happy Birthday to you!
5:40 am pst
Happy Birthday, dear Tamara!
Happy Birthday to you!
Wednesday, December 26, 2007
It looks as if Yo-yo Time may be beginning...the time I've read about when I begin to vacillate between feeling relatively
OK, albeit tired and perhaps over-medicated, and - as experienced yesterday, during what was unequivocally my darkest, most
miserable and wretched Christmas ever - feeling right there on the threshold, Death imminent.
9:02 am pst
To those of you with whom I spoke/groaned yesterday...sorry about that. Know that I'm feeling much better today.
Tuesday, December 18, 2007
Never a Dull Moment
Yesterday the nephrostomy tube got yanked from my right kidney. Sounds like a possible YEE-OWCH, eh? It was, in fact, quite
6:21 am pst
One moment, I was crossing the room, when the tube caught on something, as it is often wont to do; I paused to untangle it,
reaching behind me, grasping the tube and pulling it forward, only to find myself gazing down at the blue, catheter portion
of the drain which had, until a few seconds ago, been lodged IN my kidney.
So it was off to the ER with my Mom riding shotgun, and a tedious, 11-hour stint there, having the thing reinserted.
In the brilliant light of morning, the ordeal wasn't so bad, but it WAS disheartening; I had been doing SO well - getting
out of bed, getting downstairs, sitting in chairs, etc., etc. I woke this morning feeling quite deflated.
In other news: I've uploaded a shot of the new, certainly-not-improved, and fleshless Max to the Pics & Links page. Certainly-not-improved,
but note that I AM smiling.
Sunday, December 16, 2007
Bangs and Whimpers
Another long lapse, another e-mumbled apology, both to you and - silly, I suppose - the blog itself.
6:22 am pst
Still...after everything we've been through together, I feel it deserves better; better than this drifting off into the occasional
whimper, followed by - inevitably - silence.
(Which, ironically, is the death I am told I can expect...)
And after sticking with us (my blog & I) all this time, you deserve better. So I'm going to dig deeper, to deliver some
messages and updates more regularly. If this journey is ending - as the doctors tell me it is - then we should finish this
journey together, all of us, and we should finish it with some fireworks and flourishes, if not Eliot's bang.
I have lost a lot of weight. I'll take a photo in a day or two and post it for you. For a while there, it looked OK, especially
with my new, post-chemo curls and scruffy, unshaven look. But now my face is positively skeletal, and people have stopped
saying it looks good. (I.e., the loved ones around me are being refreshingly honest.)
I hate showering and shampooing, because I hate the feel of this alien, feather-light, insubstantial husk between my hands
- not that the hands doing the scrubbing feel or look any better. (Although my wedding band fits again - loose, even - and
that looks - and feels - wonderful.)
My arms are sinewy whisps, every rib pronounced. The port, which was once buried, lost in the fat where my right pectoral
was supposed to be, now rises a good 0.5cm above the plane of my chest - no problem finding it now, should we need it.
The lymphedema is slowly going down, so that my abdomen is approaching a college-days girth - or perhaps the lymphedema is
right where I left it, and the happy rolls of fat which kept it company are gone, creating the illusion of svelteness?
Basically, I am wasting away. (Something in there is screaming for a pun and another T.S. Eliot reference, but I'm going to
leave it alone...) This wasting - and the addition of a nasal cannula to my face, delivering a little extra oxygen to lungs
which occasionally, on exertion, feel fleetingly and terrifyingly oxygen-starved - are the only visible, outward signs of
what is brewing beneath the surface.
Whatever is brewing there now demands a nap - arguably, another outward sign, this little-old-man snoozing...