UGH!

It's officially a tie - most miserable part of this entire process goes to:

BK VIRUS = MUCOSITIS

I can't take it anymore - I can't take it! We went to the local ER again last night - there was possibly a 30 second interval between bathroom visits, and the on-call oncologist (Dr. Bardia, who is awesome) said to Gus, "That concerns me." Yeah, it concerns me, too!! We finally got home around 3am, with no news and no cures or help for the pain (although my blood counts were fantastic). The poor doctor at the local ER was like, "BK whaaaa?" We explained the situation, and he was cool about it (I like it when doctors actually say, "I don't know" instead of nodding and just pretending to have it all under control), but after he spoke to Dr. Bardia he agreed that there was nothing he could do for me. The ONLY relief I have is the one hour each day I spend in the bath. Yes, I realize this is excessive - but we have a tub and I can just lay down and soak and it's relaxing. Even sleeping kinda sucks - I wake up almost every hour to use the bathroom. My NP suggested some Ativan to relax and possibly relax the muscles, and I'd say the pain went down about 1/2 notch (I can actually go about 10 minutes between bathroom visits), so there are some small mercies.

This just hit me out of nowhere - I had no idea this was a common side effect. Apparently about 70% of transplant patients experience complications/issues with BK - and some have it much worse than I do. While I do have hemorrhagic cystitis, I'm not losing a lot of blood, which is good. Some people constantly pass blood clots and lose lots of blood, so much blood that they need red blood transfusions. So I'm grateful it's not worse than it is, but I can't imagine how horrible that must be. I just want to know when this will be OVER WITH! It's like there's no end in sight. :(

In any case, here's a pic of Daisy Mae keeping tabs on me in the bathtub. She almost fell-in a few times - it was quite cute. The kitties have been taking good care of me since this whole UTI thing started - they never leave my side and they give lots of kitty kisses and snuggles to ease the pain. Daisy has taken to "doing my hair" - she grooms me!

This is me in the Outpatient Clinic - and that wonderful woman in the white shirt in the background (it's super teensy weensy) is my nurse, Mary Beth. She's awesome.

And here's another dose of cuteness - I was sitting on the front steps the other day (I can't really go any further because I have to be close to the bathroom) and our neighbor's sweet sweet doggie Gracie came by to say hello. Gracie likes to carry her own leash.

I have to go lay down - the Ativan is kickin' in and I'm feeling groggy. Which is an improvement, believe it or not.