Tuesday, January 13, 2009

For real, part two

It was a tumor.

There had been much hand-wringing about what could possibly be wrong. My face was swelling by the hour, it seemed. And it hurt, curiously and sickeningly. I was to become intimately familiar with pain over the next months and years, but this was a unique pain that still haunts me on occasion. The skin covering my left neck stretched tight and burning over a malicious bulge that pushed on my jaw and throat and ear and made everything hurt deep into the bone. It made me cry and it scared me. There was something wrong.

That morning everything had been, quite literally, fine. There was no indication that this would be the day that everything changed. But by afternoon my jaw hurt so badly I couldn’t lie down on that side. It happened that quickly. Something was very wrong.

Nobody really knew what it was. After mumps was dismissed and my tonsils were ruled out and an abscess was rejected, my local doctor called in the experts. This was 30-some-odd years ago, and there were no CT scans or MRI's or other such diagnostic tools. Instead doctors probed and palpated and measured and examined my painful jaw and considered. And after all this, they declared it was a tumor.

My newly-acquired surgeon wore cowboy boots and had a big, bushy moustache. In his Texas-sized drawl that matched his Texas-sized stature, he announced that this tumor was the size of his Texas-sized fist, holding up his closed hand to demonstrate. And it was firmly planted in the small jaw of a shy, tow-headed seven-year-old girl. Me.

In the weird culture of medical celebrity, this tumor had the makings of twisted stardom. Not only was it huge, it was “rare as a hen’s tooth,” in the words of this surgeon, who had scoured the literature and found nothing comparable. With its remarkable size and originality, it was bound for grand rounds and medical journals and craniofacial conferences. It was a supermodel playing to medical photographers and throngs of surgical residents. It became a separate entity, and I was its vulnerable and unasked host.

There was a problem, though. This tumor, with Texas-sized greed, was pressing on my carotid artery and was growing at an alarming rate. It was trying to kill me.

It had to come out, and my surgeon and his cadre of loyal followers dutifully removed it. This was no time for conservative measures, either: nobody knew if it was cancerous. It had to come out before they could determine that. And to play it safe, they had to assume the worst, which meant they had to remove a lot of surrounding and seemingly healthy tissue. (It wasn’t cancerous, in the end.)

The left seventh cranial nerve wasn’t salvageable; the tumor had devoured it. In case you’re curious, that’s the nerve that gives you the ability to smile, and frown, and close your eye, and feel things touching your skin, and taste, and lots of other things. To address the cancer issue, they removed lymph nodes, and bone, and muscle, and some thyroid gland, and various other pieces of me. Important stuff, but stuff that you can learn to live without.

Kind of.


Surgeons have a phrase that they like to use to describe what they do: “Cut to cure.”

And they cut me, liberally. They had no choice; my life was being threatened and they had to act. So they opened up my head and neck as wide as they could. They peeled up my face and essentially removed my left ear to get at all the offending and potentially-offending flesh. Then they sewed it all back together as well as they could, which as it turns out wasn’t very well at all. They cut, and then sewed, and left me with a hole in my neck and a sunken ear and half a face that was for all intents and purposes dead, and a ten-inch scar running right down the middle of it all.

They cut. As a matter of fact, they butchered.

But cure? No. This tumor and its repercussions crushed my soul in ways that wouldn’t become apparent for a long time. I didn’t smile for a photo for years—I don’t think I ever smiled for a single school picture after this. I grew so used to social exclusion that I just kind of withdrew from my peers rather than risk inevitable rejection. I was angry beyond all reason. I hid it all well, but these things, and much more, were symptoms of an ailment that lay deep beyond the reach of the surgeons' scalpels.

The day that tumor appeared was the day that everything changed. My surgeons saved my life, but that was only the proverbial beginning of my medical and emotional journey. And as for finding a cure?
I was left to do that on my own.


  1. As usual your post was beautifully written. You will always be the bravest person I know. Thank you for sharing your story, it means a lot to read your journey.

  2. I am now officially a fan of your blog...please keep posting:)

  3. Oh. Wow. You know, I think (italics) I met you right after your surgery. Does that sound right? I moved there in 3rd grade and you were in the other class. I seem to have a slight recollection of your head wound up in gauze. I always knew that it was a tumor, and that's all I ever seemed to need to know.
    Thank you so much for sharing this. I don't remember us ever talking about it in all of our late-night sleep overs. I never even knew how much it physically hurt.
    Anyway, thank you so much. I love you.

  4. Your story, which, as everyone else has stated repeatedly, is beautifully written (I can't expect less at this point!), reminds me so much of a book I read. That book isn't so important as what you have to say, however, so please keep on writing. You really do have a story to tell us all, and I think we all want to hear it.

  5. You are an amazing writer...whether your subject matter is serious, funny, frank, or sarcastic...you have a wonderful voice. Keep sharing that voice.

  6. Your writing is amazing. Thanks for all your honesty-I'm moved.


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