Woot! Enjoy that dinner, girl. You've earned it. 
Ziyal's medical update :)
- Thread starter Tora Ziyal
- Start date
I was just thinking of you yesterday, wondering how you were doing. Thanks for the great answer.
^Yes. When I was diagnosed, I had been a member for only a year, and I hadn't been very active. The support I got was totally awesome!
And thanks to all.
And thanks to all.
This seriously pisses me off...
When I asked the plastic surgeon about the possibility of future problems with the surgical site, he said that people live for many years with as many foreign objects in them as I have, and they don't have problems... until they do. Okay, not what I really wanted to hear, but realistic. Sigh. That was barely two months ago.
A couple days ago, I noticed something suddenly wrong. Either fluid accumulating, or tissue moving around, or something. [insert profanity of your choice] The soonest they can see me in plastics is June 13. I'm supposed to go to the ER if it gets worse in the meantime. [repeat selected profanity]
Apparently I really can't win.
When I asked the plastic surgeon about the possibility of future problems with the surgical site, he said that people live for many years with as many foreign objects in them as I have, and they don't have problems... until they do. Okay, not what I really wanted to hear, but realistic. Sigh. That was barely two months ago.
A couple days ago, I noticed something suddenly wrong. Either fluid accumulating, or tissue moving around, or something. [insert profanity of your choice] The soonest they can see me in plastics is June 13. I'm supposed to go to the ER if it gets worse in the meantime. [repeat selected profanity]
Apparently I really can't win.
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Oh dear. {{Ziyal}} Hope things get better with that. You'll beat this!
Thanks, guys. At least he said it was still okay for me to start PT Friday. Maybe that'll pull me out of the emotional slump that goes with whatever physical is going on.
Aw, man, that's irritating. Hopefully the physical therapist will have something encouraging to say. I hope it's just something minor. Good luck!
Thanks, RJ. It is irritating. Actually, it's depressing as hell.
Thanks, Rhaven and TheSeeker. 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!
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!
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Aw, a kitty arrived while I was writing! Thank you, RJ.
My first appointment with the physical therapist went well. He was really impressed by what good shape I'm in, considering all that I've been through. But he's still going to make me work really hard -- you know, work my ass off 
-- which is what I want.
On the other hand, I'm back to those damn intermittent, low-grade fevers.
-- which is what I want.On the other hand, I'm back to those damn intermittent, low-grade fevers.
Did the PT have any insight into the issue you're being seen for on Thursday?
No, butt I didn't expect him to.
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