Possible Second "Bump"

Whoah, so today there was news. Not so great news, actually pretty scary news.
My port, the thing they put in surgically when I first got here, has to be taken out tomorrow morning. Because the incisions never healed. It's been a month, and they never healed.
I was due to be re-accessed today. Which is a weekly thing. They take out the needles that go into the port and replace them.
So I was de-accessed for two whole hours, which was wonderful, and I'll write about that later.

When they went to put in the new needles (with the little black butterflies), they (the nurse and doctor who came to re-access it) got worried about the oozing that was still coming out of the cuts. And they thought they saw a hint of infection. They sent for blood cultures, and more people for more opinions. Called in the surgeon who put the port in. He didn't like the look of it, said he hardly ever saw the incisions go that long without healing. They talked about it for a while.
Came up with this plan: Tomorrow morning, take it out. The whole port. Use an IV to continue my meds. Still send me home on Friday, with a stuffed hole in place of the port (the idea of that kind of blew my mind).
On Tuesday, I'm going to get a Broviak put in, which is the other option for giving chemo. It's easier for it to get infected, because it's always open, which is why I got the port, but at this point it's less likely to get infected than my un-healed port. So, more surgery.
I'm really sad that I'm not going to be able to use the port. At first, I was nervous about it, because unlike the Broviak, every time I come in for out-patient treatment, I have to get poked. But today, when they re-accessed it, I realized that I don't mind it that much at all. And I was getting used to the idea. The nice thing about the port is that when I'm home it's completely healed over, and everything feels normal. The Broviak, on the other hand, always sticks out. No pokes, but stuff hanging out.

Now I'll talk about how awesome I've been feeling. I've had energy, I've been completely awake, I've been out and about, I've been DOING things, I've been happy, I've been just plain great.

Yesterday was beautiful.
Rafi and Sylvia came over, and mom accompanied us down to the "Specialty Shop", where I got to try on wigs.
As soon as I walked in there, I realized that I probably would NOT be walking out with anything to seriously plan on wearing to cover my head. They were so... styled. Nothing felt like ME. But it was an absolute blast trying them on. I tried on red ones, black ones, grey ones, strange styles, all sorts of stuff. We took pictures and laughed a lot. Then I got into the bin of free ones. They were not in perfect shape, and all of them were definitely meant for someone a LOT older than me. Those were the most fun to try on. And I left with five of them. Two salt-and-pepper ones, a short, grey, curly one, and two short, curly, red ones. The lady there assured me that she had plenty, and no one was taking them, and that I shouldn't feel bad for taking five. They're just so much FUN!

After that we had a tie-dye party in the rec room. Rachel, one of the awesome "Child Life" people, was organizing it. Basically, we cut up sheets into bandanna sized squares, and tie-dyed them. And some people dyed socks. Anyway, it was fun. Buckets with colorful water and soggy masses of fabric sat in my bathtub for the next few hours.
Meanwhile, Paige (another Leukemia patient), Sean (another patient), and Jessi (another awesome Child Life person) were going for a walk, and invited Sylvia and I to tag along. Paige and Sean were somewhere around my age, maybe a bit older.
We went down to the lobby and out one of the doors. Past the bus stop, down to the sidewalk. I had no idea we could just walk down the sidewalk. We walked almost half way around the hospital (at one point Sylvia had to go back to catch her bus). It was interesting, maneuvering Winnifred over all the cracks and curb cuts. We turned into a random driveway of the hospital, and wandered in through some random door. Jessi seemed to really know her way around. I was completely disoriented. This place is huge. She led us to this cute little courtyard, with brick paths and lots of squirrels, birds, and benches. It was fun getting Winnifred to roll over the bricks. We sat there for a while, talked a bit, and then headed back. Lots of strange hallways later, we got back to 4-1400.
Kind of drained of energy, I sprawled on my bed for a while. Then I got up and started rinsing out the tie-dyes. They came out awesome. I love tie dye for that. It looks so muddy and messy until you take off the rubber bands and un-twist/un-fold the fabric.

That evening, around 6 fiddlers from the Kanack School of Music and RPYO showed up, as well as a few other visitors, and we had a jam session. It was sweet, getting to play with people. I had hardly played flute at all, and then suddenly we were playing for at least an hour and a half. It was great.

Sooo tired out after that day. I thought I would crash, and sleep well that night. It sure felt like I was about to. But after everyone, including mom, left, I was pretty awake. I tried to sleep, failed, had a snack (Kefir and a bagel), and took out a notebook and all the writing utensils in my drawer (a LOT). I had discovered earlier that day that I had sort of lost my handwriting. It was really scary. My hand was shaky, the pen felt slightly uncontrolled, and my letters were really sloppy. I realized that I had hardly written anything for a few weeks. I felt really bad that I'd let that happen. Hand writing things has always been a huge part of me. I love to write letters, and I journaled regularly. I always loved the feel of the ink going onto the paper.
So I started to practice writing (!). I rambled on paper for a long time, and tried different angles. Even now, it's still shaky. So yeah, I'm going to work on that. :)
Cheryl, that night's nurse, came in at one point, and I was sitting cross-legged on my bed, bent over paper, writing. I was really enjoying myself, reuniting with the pen. I paused.
She was fiddling with Winnifred's buttons, and then said something like: "Well, y'know, I think Winnifred needs an attitude adjustment." Apparently he wasn't letting her do some sort of programming option. So an attitude adjustment is what he got. She turned him off, and then turned him back on, and he grudgingly agreed with her.
Anyway, we had some good laughs about that one. She stayed for a while, and we talked about all sorts of things. We decided that I should take some of the Mickey Mouse masks home, some for me to keep as mementos, others, we joked, for me to give as birthday presents.
We talked about favorite words, after she noticed the poster that TuneScape and the Shinglehouse Festival sent me, with all those strange and cool words written on it (strange and cool words are one of my things).
She told me about how much she loves Biology, and the classes she had taken in college, and we got me all excited all over again for the Bio class I'm taking in the fall.
We laughed a lot over random things. I felt so happy and light, and not tired.
At around 2 AM I went out for another snack, and then I finally got some sleep.

Up at around 6:30 this morning. Just in time to order breakfast, which was top priority.
It was sooo good, I was so hungry, and I felt wonderful afterwards.
And I had a plan. The nurses had told me there would be a gap between 10 AM and Noon today, where I wouldn't be given any antibiotics through my port. And I was due to be re-accessed. Which means being de-accessed first. Which means freedom for two hours. Which means a shower free of biohazard bags and tape and worries, and all that stuff. And then I had all that time before I had to be re-accessed. So I thought it'd be really fun to go exploring around the hospital, both inside and out (though mostly out, because it was such a nice day), without Winnifred. I'd gotten a taste of it yesterday.
So, at 9:45 I got clean clothes and towels ready, Emily (my nurse) came, and I was de-accessed. It took a while to get the site cleaned up and find out if I could get the stitched up part wet, and all that. Finally it was decided that I didn't need any of the dressing on at all. So I really had a free shower.
Rafi and Sylvia showed up while I was in the shower. I had to make sure that my head was covered, and that I had a shawl or something to cover my shoulders, because the Vincristine really increases sun sensitivity, and the nurses wanted to make sure I didn't get sun burned.
So I put on the fuzzy pink hat that Victor brought me, and grabbed a huge, beautiful scarf that Pamela sent me, and signed out.
It was a blast, leaving the hospital with just my friends, and exploring. I felt like I was playing dress up, wearing the pink hat, and having the scarf tied around my shoulders like a cape. It was fun.
We walked down the same sidewalk as the day before, and turned into the same driveway, but this time we tried to figure out how to get into the playground that was locked. There were people in there, so we thought we could find a way from inside somewhere. We wandered for a while. Found the same courtyard that I'd sat in the day before. Didn't stay long. We went back in through a random door, and ran into Eric, the amazing social worker who has been by my family's side through this whole thing. He does things like: being awesome, arranging for the room that my family has at the Ronald McDonald House, knowing lots of things, being awesome, did I mention being awesome? Anyway, we told him we were looking for adventure, and he showed us to an inconspicuous little door that led to a flight of stairs going down. He told us to take that tunnel, and we'd get to the nursing school.
The tunnel was amazing. It was entirely painted grey, and had a low ceiling, and all sorts of pipes running along the walls. The hallway was slanted slightly down.
There was this random painting on one of the walls. It was very colorful, and had lots of celtic knots and a sort of celtic knot bird. Completely out of context. Made me very happy. We tried to take a picture, but Rafi's phone died, and I had (foolishly) left my camera in my room.
We ventured down the tunnel. It was very warm down there, and wonderfully eerie. At the other end, there was a staircase leading up.
At the top, the door opened into this fancily carpeted entry-way. The nursing school. There was a big, high-ceilinged room with an oriental rug and a baby grand piano. Several students were eating lunch and studying. We went out the doors and into another courtyard. Saw a balcony somewhere over the building we had just exited. We went back inside, and tried to find a way to it. Going up the little carpeted stairs, I tried to take them two at a time. And collapsed. It was really strange. I didn't trip, I just sort of ended up on the floor. A little disturbing. I wasn't tired or anything, I guess my muscles just gave out. Sylvia had to help me up. I really don't like the idea of that sort of weakness. I felt completely fine.
We took the elevator to the top floor. Found another staircase, took those. But they dead-ended at a locked door. No balcony there. We wandered the carpeted halls, past open office doors. A couple of people asked if we needed help finding something.
We tried several different staircases, never found the balcony. I had no problem with the stairs! Heh, a big improvement from before I even got into the hospital (that's one of the reasons I got a blood test in the first place).
I needed to be back in fifteen minutes, so we started to make our way back. We exited the nursing school, crossed the street (we'd crossed under it through the tunnel), and ambled back to the hospital. Going up a grassy hill, I felt that weakness in my legs again. Was very careful not to fall.
That outing just made my day. We took the stairs back to the 4th floor, and I was hardly tired.

Then came the re-accessing, which was when I got the bad news that I started this post with.
Since I've already written about that, I'll skip over it.

Sylvia and Rafi were in the rec room, because of all the doctors, nurses, and the surgeon in my room. When I was free, I went out to join them. We did a puzzle on the air-hockey table, and listened to music from the jukebox (which has a lot of stuff on it, it's really cool). I was a bit shaken, but felt happy to still be with friends, and doing a puzzle. Which I get addicted to doing really fast. Sylvia had to go. Rafi and I finished that puzzle, and started another one. Nearly finished it, and then he had to go too.
I went back to my room, and kind of crashed. I had dinner, which was good, and then, at around 7, I fell asleep. And it was the deepest sleep I've had for a long time. It was really strange, and kind of cool. I dreamt that I was given anesthesia. And so I felt like I was given anesthesia. And I wonder if that is why it felt like such a deep sleep. Haha, I don't know.
Anyway, I had some other dreams, strange ones. Which I've been having lately. Can't remember them very well.
Woke up at around 10. Mom had gone home, and everything was quiet. I actually tried to go back to sleep, but couldn't. So I had a snack (because that's what I do), and did stuff (can't remember what, not much). At around 11 I decided to watch a movie. So I went to the fridge to get the last food I'd be able to eat until tomorrow (because they're giving me some sort of anesthesia, I can't eat anything past midnight). I watched "Hitch" on the hospital TV. Part way through, I realized it was midnight, and quickly ate my soup.

And now here I am. I think this is the first time I've written right up to the moment.

Cheryl has come in a couple of times while I've been writing this. We had some more random conversations. I really like talking to her.

Well, in around 6 hours I'll be deportified. Yikes.
G'night.