Tuesday, September 7, 2010

What up?

Soooo, I guess the thing with being a Weggie that is a commonality amongst most of us is that uncertain feeling I spoke of earlier. I've been having a return of the old symptoms - not to the same intensity as before I got diagnosed - but they're there nevertheless. It's funny actually, 'cuz just the other week I was saying to someone how I don't remember the location of the pain I had in my head... I remember the unreal, crazy, ridiculous intensity of the pain, but I don't remember where on my head it was. Well, ask and ye shall receive! I now remember exactly where the pain was because I have it in the same places. If you're curious, it's all over the place really, but the epicentre is in my ears and it radiates out in all directions. Temporal to sagital, occipital, mastoid to mandible (that one feels like a bad toothache) and of course there is the frontal / sinus area above eyes, and below around cheekbones. Cool, hey? My nose was hurting too the other day quite bad, and all I can think of is, how fast do the granulomas eat away the delicate bones of the sinuses when this thing is active and thus, how long before my nose caves in if I'm flaring. My joints are also hurting along with my chest below my ribs (which was owie when I went into Emerg that fateful night).

I'm really really really hoping that this is all because of the prednisone wean and not a flare. I just read some stuff on my 'go to site' where all my super wise Weggie friends manage to bring me back to reality when I have a panic attack in my head that the joint pain and some of the other stuff I've been feeling might be associated with the wean, so I'll hold off a little more and see what happens. The problem is that if I'm active again, the trick is to catch it ASAP so that A) the damage done to the body is minimal, and B) we don't have to start the treatment from scratch again. I really want to be off these drugs. We're talking about getting off the cyclophosphamide in the next month or two and switching to something less toxic. Will still be on chemo daily, but not the 'super chemo' that can mess you up pretty good.

Funny where life's path has veered to in my situation. Who woulda thunk that these would be the crazy thoughts going through my head five months ago? I had a completely different set of crazy thoughts going through my head at that time. Thoughts like 'hope I do well on that web job interview', 'how am I going to get Hana to gymnastics today?', 'can't wait for the weekend so that I can go skiing, and I sure hope is pukes snow on Friday night', 'what am I going to make for supper tonight?'... you know those kinds of crazy thoughts.

No comments:

Post a Comment