Sunday, April 20, 2008

Out comes the line!

Yes! It's true, I no longer bionic, and can't mainline anything. I'm SOO excited. Just in time for tank top season. I was pretty nervous getting it removed, since the last time it was AWFUL. But they gave me an ativan to calm me down and 20 relatively pain-free minutes later it was done. Ahhhh. It really frees up my nightly routine not having to flush that thing every night. But, now I have to get poked for blood work. Thankfully I haven't really been poked in such a long time, besides those shots I talked about last time, but they didn't really hurt.

As for the gvh, its kinda like a traveling circus. I have a skin rash that moves around, so I'm constantly rubbing some sort of steroid cream on all my bits and pieces. I'm hoping this is as bad as it gets. I'm completely off the immune suppression, so keep your fingers crossed!

Thursday, March 27, 2008

An update? ! Finally!

Ok, I apologize for not posting in months. I could give you a ton of excuses, but in truth, it's mostly because I've had my mind on things other than my health. Not to say that I'm not keeping healthy, I've just got other things going on and have become more interested in those things than writing about health matters. I think spending so many months obsessed about cancer that I went through a backlash. Also when I stopped blogging I was trying very hard to get back to "normal", which is a whole other blog! Anyway, what you're really wondering is how I'm doing. And the answer is very good, thank you. My results from the 100 day workup were all favorable, they found no leukemic cells and everything is going just dandy. Since then, I have been tapering off my anti-rejection/immune suppression drugs which is great. That drug was really hammering my kidney, for which I had to have IV fluids. But now, I'm on low enough doses that my kidneys are recovered and I'm actually expecting to get my line out soon. Boy will that really make me feel normal!
More recent health news is that they believe that I have chronic graft vs host (GVH), which is good and bad. It's good, since that is a strong indicator that I've also got graft vs leukemia, so my new immune system is taking care of whatever pesky leftover leukemic cells remain. The bad news is that I have the annoyance of dealing with however this GVH decides to manifest itself. There are 3 outcomes: 1) the GVH gets bad enough that they have to put me back on immune suppression and possibly systemic steroids 2) we treat the GVH topically and it goes away, and 3) we treat it topically, it goes away, and it comes back, goes away and comes back, possibly for years to come. I'm going to pick option #2. So far, the GVH is inside my cheeks, they are a bit swollen, though I'm not sure enough to be noticeable, and they feel like I've been chewing on them. I've got a steroidal mouth wash that tastes like cherry Robitussin which I use 3 times a day.
Oh, and the last bit is that a received tetanus and hepatitis B immunizations during my last visit. That was a surprise, I'll take it as a good sign!