First of all, they know how to avoid being the whipping boy for the wrath and anxieties of freaked-out parents. They tiptoe around words like "cancer" and "damage." You know, we've all experienced it: when it's going to hurt like crazy, they say it's going to "pinch" or that you'll "feel some discomfort." OK. I get that. Keep the patient (or the patient's parents) calm.
Second, and ironically out of the same mouth they softened the initial blow with, they tell you the prognosis is worse than it is. I'm sure in some cases, the worst is true. But they go ahead and tell everybody to expect the worst so that they can have at least a few happy patients (or parents) for whom it was better than they said. They totally get the under-promise, over-deliver concept.
Third, they only tell you enough about said scary prognosis to get you to let them treat you. And granted, we would have made no other choice but to have Teague's tumor removed, and we probably would have gone ahead and radiated, even knowing what we know now. And it does seem that, looking back, we did get quite a bit of info on that consultation with the oncologist before we began treatment.
But now that it's over, and we're just doing the checkups, little bits of ugly information are seeping through the cracks of the doctor/patient facade. The fourth and final thing I've found is that if you ask them, they will tell you. After they've had their go at treating your illness as they see fit.
Don't get me wrong, we didn't get any bad news. I just contacted Dr. Watson today for clarification on some things he's been saying, and he gave me the medical terminology and descriptions, and they kind of freak me out and make me want to squeeze my toddler and cry.
We've been told in the past that sometimes scar tissue will appear on an MRI, and the only way they know if that scar is not new cancer is to compare it to the next MRI and see if it grows. And they told us at Teague's last appointment that there is some scarring. So I asked today, for clarification, if they had seen that before, and they have. So the good news is, Teague's scar from having the tumor scraped away was identical on his November and February images.
Now for the creepy, I-wish-I-hadn't-asked-for words, straight from the oncologist's e-mail:
"He’s got something called encephalomalacia – which is scarring and some atrophy of the brain where the tumor was removed."
Whaaa? You shrunk his brain? I knew about the scarring, but ATROPHY? And the clarification, after I asked just where that atrophy is:
"Teague has cerebellar atrophy.... This has implications mostly for fine motor skills and balance. Ballet is probably not in his future, but most other activities should be do-able."
Now, granted, the child has not shown any signs of having balance problems. Not significant balance problems, anyway. He has to be hours-past-bedtime tired and trying to run, and then you see a tilt. I just don't like knowing about the atrophy. Freaks me out.
Now I know why our dear Watson always asks about his balance; he's just seen an image of a cerebellum that doesn't look like it could hold a child steady. But somehow Teague's does.
Ah, I should have known I'd find the miracle in there somewhere.
