M’Histoire: Passing the Cup

Blue Crane Cup

I don’t know if other folk are like this or not, but for me, the more
I think someone is trying to hide something from me or cover it up,
the more determined I am to find out about it. That’s why I started
learning French — my mother’s family is Cajun and my parents used
flashcard French to keep secrets from the kids when I was young. So of
course, I had to take French the very first opportunity I had. It is
almost automatic, I don’t even think about whether or not I actually
want to know, I have to know!

When people talk to me about something and won’t meet my eyes, well,
they are hiding something, right? When my clinical friends won’t meet
my eyes, well, what could be the reason? Does this mean I ought to be
more worried than I am? Because I’m not as worried as I could be. When
the docs thought I might have ovarian cancer, well, I was really
worried then. But a very slow growing bone tumor in my mouth? Not so

For one, I know this bony growth intimately. It isn’t hidden away in
my belly where no one knows what’s going on, it is right where I can
see it and touch it, and do touch it countless times every day. I’ve
observed its growth from when it was just a tiny thing to this kidney
bean sized lump that lightly scrapes against my tongue when I swallow

For another, I’ve been working with patients with facial difference
and count several among my friends. I know that the surgery is tough
and miserable and that it isn’t fun living with the subsequent
lifestyle changes, BUT I also know that you can do it, get over it,
and go on with a relatively normal life. I won’t ever say I would want
this to be cancer, would ever choose this, but if it is, I figure it
could be a lot worse.

Actually, sometimes when folks meet your eyes they are also getting
ready to hide things, and then with healthcare it gets complicated by
the culture of clinical care in which it is some odd balance between
“informed consent” (often neither “informed” nor “consent”) and
protecting the patient from what they don’t want to know (but without
any good way to find out how much they want to know. Telling patients
the truth can be a kind of attack also, intimidation, kind of ‘see how
much I know and why you really don’t want to ask?’ Or it can be
compassionate and genuine communication.

When I was in the first meeting at oral surgery, I remember when the
penny finally dropped for the student interviewing me. He froze,
staring at me, right at me, as if he’d never seen me before. You see
this whole situation goes back a while. I started to say it started in
October, but really, the bump has been growing for years, at least 10
or 15, and I first remember noticing the oral fistula when I was in
4th grade. But the bump, I’ve been trying to tell folks about for at
least a decade, maybe two, and the docs kept saying, “Don’t worry,
this is a normal anatomical variation called a torus.” to which I kept
saying, “But it ISN’T normal!!!” thinking, ‘If it’s normal why does it
hurt? And it’s NOT a torus!’

When the student figured this out, he asked me, “Do you mean when you
were born the roof of your mouth was smooth?!”

I laughed, “That’s what I’ve been trying to tell people for years!”

“When did you first notice it?”

“Oh, I don’t know. Maybe my late 20s, maybe my mid 30s?”

It never entered my mind that the docs thought I was born this way. Or
that they never noticed the blasted thing was growing. I kept trying
to get their attention, and just never said quite the right things. I
didn’t know what were the right things to say.

So when the student had me wait in the room while he went to talk to
the attending surgeon, my ears were cocked and I was already assuming
that there was something going on that concerned him. I overheard just
a couple little snippets — “midline,” “bony growth,” “late-20s,” and
“but she’s the DENTISTRY librarian!” I wasn’t sure quite how those
pieces fit together, but I was curious.

When the surgeon came in the room, he was followed by a small flock of
students, with the usual embarrassing dynamic of “Wow, the surgeon is
GOD” and “God, I feel so funny when the patient looks at me.” The
senior student who’d interviewed me was clearly relieved to pass my
case over to an expert, and reported out clearly. I committed the
words to memory, and when I got home, started poking around the
internet trying to figure out it was that had gotten his attention. It
really didn’t take me long to find something that fit pretty closely.

Slow midline bony growths seem to usually be osteochondromas (benign).
They sometimes convert to chondrosarcomas (cancerous, malignant),
which is usually indicated by pain, and usually the pain is pretty
definite, not the mild stuff I’d been experiencing. These usually
happen in the long bones of the arms and legs, but rarely happen in
the head, and very rarely in the palate.

If it is cancer (which is unlikely), the surgery is not pleasant,
lifestyle changes ditto, but the good news is no chemo or radiation.
If it is not cancer, the whole thing is not a biggie – they slice the
bony bump off and send it for screening at pathology, and close the
fistula. I do what they recommend to recover from the surgery and go
back to my normal life. Either way, this could be a lot worse.