First, I really hope Tommy Chong doesn't sue me for the title.
Second, I just thought it was appropriate considering what this posting is going to be about.
;)
Yesterday started out at 5AM and we knew it would be an extremely long day. I had lab and immediately after that I had a bone marrow aspiration immediately after that. I keep forgetting not to lean on the left side when I sit, but it's easier said than done. Immediately following that appointment, I had one with my new transplant doctor. Personality wise, he is on the opposite end of the spectrum from my original transplant doctor. He's got a demure demeanor and is rather soft spoken. I like him and appreciate that he forces you to ask questions. After this appointment, we had to hoof it back to see my Leukemia doctor. If you think that any of my appointments were on time, you'd be sorry. I was 1hour-30minutes late for my last appointment. We were told to go get lunch and come back at 2pm. So, we ended up having to do something else and ended up getting back to the Leukemia clinic around 2:30 PM. Shame on us, we made a doctor wait.
Here's the skinny on what we found out. My blood counts were good. They were almost normal, which would explain why I was able to walk half a mile without falling to pieces. My BMA came back good. I had 3% blasts, which is normal. This is a preliminary reading. We're waiting for the pathology report.
We had another interview with WBRZ, today. As always, it was a pleasure. We'll keep everyone posted on when the story will run.
I'm sure most of you are wondering about the title, so I won't keep you in suspense anymore. I was readmitted into the hospital for round 5 of chemotherapy (Yippee!). We were told that the hospital was completely full and running in diversionary mode. I suppose this meant that they weren't taking any more patients for in patient treatment. I was all for that and had visions of going back to the apartment to veg out with my knitting. Oh, what a sad fantasy that turned out to be. I was one of the lucky few to snag the last available room (again, Yippee! with shades of Ben Stein). I'm housed on the tenth floor, which is the leukemia floor. As most of you will recall, I was here once before, but in the opposite wing. When Chris and I reached our room it was just after 5 PM. We dropped our bags and started checking out the layout when Chris asked me if I smelled something. I was wearing a mask, so it took me a minute but I did indeed smell something. I wasn't in a hospital room. I was standing in a men's urinal at the height of Mardi Gras, and we are not talking about in a bathroom at a 5 star establishment. We're talking about that shady gas station where the restroom key is tied to a shard of concrete block found in the parking lot. As an aside, who would knowingly steal the key to the bathroom of one of these places. Are your standards of hygiene so low that you would want carte blanche in one of these places. You have to use your foot to flush the toilet to avoid actually touching the commode handle with bare skin, if you actually cared about such a thing.
We immediately walked out and informed my nurse. She got the charge nurse involved and it all went on from there. After several phone calls, one of which was to the hospital administrator, who kept asking if there really was an unbearable odor, the room was cleaned twice more. After cleaning number three, we were asked to come back in and evaluate the smell. At first, you could only smell cleaning solvent, so it was on the tip of my tongue to accept the room when the smell of urine came back with a vengeance. We walked back out and waited for some other solution to be found.
In the meantime, I asked if we could leave and be readmitted in the morning. The charge nurse called my leukemia doctor at home who was paraphrased as saying, "Under no circumstances was I to leave." It seems that my chemo drugs had been mixed and were ready to go. By this time, the hospital administrator came up to investigate the smell herself. Once she caught a whiff she got building services up here to do something. They replaced the shower curtain and checked the drains, etc. Still, there was a distinct smell in the entire room. House keeping came back and cleaned twice more with a different set of chemicals and they left industrial strength room deodorizers. Last night, the room smelled like synthetic oranges--chemical makers will never get this right in my lifetime.
At the moment, there is the slight scent of urine. I'm sure it's not my imagination. I only worry that the people who come into my room think the smell is coming from me. I know I have bigger things to worry about, but who wants to smell like eau de pee-pee? I wonder if I should just bring up the smell to throw suspicion off of me, but that tactic always seems to make you seem even more suspicious.
I've been promised a room change when one becomes available. I don't think that it's going to happen since they've already roped me into the fragrant room. As a hospital employee, I wouldn't want to have to deal with the next patient complaining after I'd already dealt with it once.
To add fuel to the fire, I'm retaining fluids again, so I've been given lasix. This is only adding to the urine rumors. I will forever be remembered as "that girl" to the tenth floor staff. It's like being a Charlie Brown character. Watch out Pigpen!
On a personal note--no urine anecdotes involved:
Amy, you have to love Christopher. He's got such a great sense of humor. Definitely your child.
Mabyn, if anyone saw me in a backless gown right now, they'd think they were seeing a science experiment going horribly wrong. My back would have more creases than an accordion and I'd look like I was smuggling volleyballs from the front. You and I both know that I am smuggling volleyballs to the Backyard Sports Underground, but that's just between us. :)~
I had a visit from the attending physician this morning and he said that I'm doing very well. He did comment that I'm having opposite reactions to my chemo protocol than most other patients. It seems that other patients become nauseated during the even rounds and they do better on the odd rounds. I get nauseated on the odd rounds and had supporting physical evidence last night. If everything goes as history suggests, I'll have a present for the nurse every night between 8pm and midnight. The vomiting usually stops within a day of getting back to the apartment. I think the mesna has a lot to do with it. Here's an interesting fact that I only just found out. I get drugs to help with my nausea and for the entirety of my treatment, I thought that they worked to calm my stomach. Turns out, anti-emetics work on your nervous system. Stopping vomiting has more to do with your brain. Crazy.
Enough of the delightful workings of my gastrointestinal tract. I could continue to rhapsodize about my inner workings, but I'll spare you for now. Chris is off campaigning to keep me around for a while more and I think I'll have a nap. As soon as we get some good news, we'll post it. I also want to apologize for not having the fun thing done. The build up has been ridiculous, and I know that when you see it now, you'll think, "All of this for that?". These past few days have been so hectic, that when we get to the place with the fun stuff, it's closed.
Everyone take care.
There are some other events from today to report. For the first time Ann had an accident with her central line catheter (CVC). She asked to take a shower and the patch that was constructed for her failed. This got her tegaderm bandage soaked and water actually managed to get to the hole penetrating into her chest cavity and artery. This could be extremely bad.
I feel like the accident is my fault. I was talking on the phone, trying to get something done and I didn't check her shower patch made by the nurse closely enough. If I had I would have seen the problem and asked the nurse to make it again or get me some larger tape to fix it. Stupid! Just %&*#@ stupid of me!
I wanted to answer a comment someone made on to a previous post. The owner of the New York Bagel Co. on Jefferson Hwy in Baton Rouge is a good friend by the name of Ann Tran. Ann Tran has kindly offered to promote our cause and run some specials in her store to help us. She is a very kind and generous woman, who runs a wonderful business. If you have time and are near Jefferson Hwy in south Baton Rouge, please stop in and visit the New York Bagel Co. you won't be sorry.
Ba Ngoai , Ann, Ma Hai, and Ann's cousin 
Ann and her Uncle Loi at Fisherman's Warf