. I don't think it's anything serious, but it's still frustrating and discouraging.
I tried to convince myself that this was pretty much all over, but the reality is that, with chordoma, there is
no "over". Unlike many cancers, where if you don't have a recurrence for five years, they say you're cured, this thing can come back any time. People go six months, six years, 10, 20 or more years and suddenly have a recurrence. So it's always hanging over our heads.
And even if there's no recurrence, most of us have at least one obnoxious adverse effect from our surgery. For all that I'm feeling sorry for myself, I'm probably doing better than average on that score. Many people whose tumors were in the same location have colostomies, or have to self-catheterize for the rest of their lives instead of the six months that I did. The people whose tumors are at the other end of the spine have a whole set of lovely hearing, vision, and swallowing problems to choose from.
One guy whose wife I've become close to is having increasing cognitive problems. His tumor hasn't grown recently (a lot of the ones at the base of the skull can't be removed completely), but all the treatment to keep it that way is catching up with him.
It's just a damn nasty disease!
I've started doing some volunteer work, just one hour a month, reading to pre-K kids at the school up the street. Today was my second time. If the plastic surgeon had been able to see me today like I'd hoped (he's in clinic only a half day a week), I would've had to cancel. Ironically, the only thing on my calendar next week was also on Thursday afternoon, so I had to reschedule that
. I was hoping to find a paid job a few hours a week, but this not being able to plan ahead nonsense is going to put a real crimp in that.
Sorry. If you read it all, THANKS!