Tuesday, May 17, 2011

Our Little Monster

Got my biopsy results today.

I have what my transplant clinic described as "minor inflammation," which could be caused either by "true" rejection or just kind of brought on by the other part of the news, which is that my goo culture from the other day grew out our old friend pseudomonas. Talk about a party crasher. Anyway, the combined effects of these results is more IVs (polymyxin and aztreonam) for 3 weeks and a 2 week taper of prednisone until I get back to my maintenance dose of 10mg.

Luckily, the pseudo is just hanging out in my airway -- a sign that once again this is all about the sinuses and much less so about the lungs. Unfortunately, the added rejection/inflammation (it's been labeled as A1 rejection) means that I have to postpone my sinus surgery for 4-6 weeks to give my system some time to reset itself and avoid extre infection risk. And I also have to get another bronch in 3 weeks, which obviously isn't the best news in the entire world, though honestly they feel like old hat now. I think a part of me feels weird whenever I'm not on versed after the past year.

My general sense right now is that things, quite honestly, could be worse. Not sure if that's just because I have so many friends who actually are doing worse than I am, or whether it has more to do with the fact that actually facing up to the past year would involve going somewhere I just don't want to go right now. I think it's the former. Weirdly, the one emotion I don't feel right now is fear. I feel anxious to get to the other side of this bridge, impatient, frustrated, hungry (thanks, prednisone!), kinda whiny, and a little overwhelmed. But I don't feel scared. Somehow or another the last couple of years of living in constant infection have coupled with 29 1/2 years of life with cystic fibrosis to make me much more prone to sarcasm and humor in the face of illness than tears or nervous worrying. And I still haven't figured out if this is a good thing (because it keeps me sane and productive) or a bad thing (because it inhibits me from taking things seriously), but I can tell you without question that it is, for better or for worse, a Piper thing. I have the feeling it might be kinda rampant in the CF community in general, to tell you the truth.

At any rate I'm still at home vs. the hospital, I'm still confident that my doctor knows what he's doing, and I'm still at least somewhat on this side of the whole "not crazy" spectrum -- though that last one might well change after a couple days on high dose steroids, believe me. And for all of those things I remain, for now and for always, extremely grateful.

For all those other things, though, I'm not grateful at all, which is why I wrote a simple (and uncharacteristically "R" rated for my normal internet chatter) status update on Facebook this afternoon:

dear CF: fuck off, you little monster. thanks.

That one little sentiment got more "likes" more quickly than anything else I've posted on there. Ever. Which means that to anyone who has ever wanted to scream, cry, kick CF where the sun don't shine, and then run away laughing: don't worry. You have no idea just how not alone in that you are.

Much love and happy hunting to you all, my beautiful fellow monster fighters.


  1. I haven't commented lately, but I am reading and I am totally on your side here, wearing a big placard that says FUCK CF on it in big bright red (green might be more appropos) letters. I am also telepathically telling your lungs,airways, sinuses, etc. to get with the effing program here. Looks like they're just really hard learners, but hopefully once they get the hint, everything will back off and give you a long and well deserved rest!! <3

  2. Hey Cyster, Sorry to hear about this news. Stupid CF -- Stupid sinuses... I have MAJOR sinus issues myself and have had over 30 surgeries. I recently started a sinus neb thing from ASL pharmacy. It seems to have really done the trick for me. I hope you can get thru this, get your sinus surgery and then have a BREAK from all the stupid crap that's been going on. Sending positive vibes your way!

  3. Of the possible outcomes, this one's not all that terrible. I'm glad to read you're doing as well as possible.

  4. I'm jumping on the FUCK CF bandwagon. And I'm going to add FUCK CANCER too :)

    Thanks for making me smile Piper!!!

    Steph PinkPigg