The doctors. Today I decorated my room with a bunch of pictures that I had printed for college. If I get all settled in, then it’ll be time to go home, right? A bright pink Care Bear (the cheer bear) and my pictures definitely brighten up the room a bit. The view from the 11th floor can be nice, but I will admit I miss being at home in the woods. The sky was beautiful the other night though! There was a bright pink cloud that disappeared pretty quickly but we enjoyed it while it lasted.
My fever has been gone since the ER last Friday night (well, Saturday morning) but my ANC is still too low to go home. If you go to clinic and have an ANC of 0, they let you leave, but once you’re inpatient, it has to get to 200 before they let you go. The doctors and nurses keep mentioning the ANC dance, but I have yet to see a demonstration so I’m not quite sure how it goes. They give me platelets and red blood cells when those counts get too low, but unfortunately I have to make my own white blood cells. Because of the chemo, I’m not making many right now, which is good overall but bad for going home. It feels like I’ve been here forever but the doctors said that some kids don’t get to go home their entire first month, so I’ve been thankful that I had a while at home before I got a fever. It’s still frustrating to sit here waiting for my counts to go up though, knowing that they’d probably be going up just as quickly (slowly) at home, where I’d have more freedom. However, this isn’t a time I really want to push the limits so I’ve been trying to stay busy and enjoy the little things. The other day we discovered that tacos are available for lunch and dinner if you ask correctly. They’re nowhere to be found on the menu, but I’ve had them twice now! Also, the nurses are always happy to see me even though they have to wear the isolation gowns. It’s nice not to be a dreaded patient! I’m still on isolation for the cough that I’ve had for a month, but we were eventually informed that I can leave the floor. I’m not allowed to walk around the floor because I could get other people sick, but in the afternoons I’m disconnected from my IV pole for a few hours and can wander around the rest of the hospital, masked of course. We don’t really understand the rules either, we’ve just been following the instructions. Tomorrow, since it will have been a week since the flu swab (which is negative so far), I’ll be off isolation on the floor and can go to the playroom or just walk around the floor. Too bad I already missed the massage day… Overall, it’s been a pretty uneventful week. Allergic reactions are significantly less scary when you know what’s going on. After everyone assumed I was allergic to TPA the other day, we decided there was something else stuck in my line that was causing the reaction. I’ve been drinking plenty of water so my fluids have been slow, but when I got chemo through my line on Monday night at a faster rate, I had another allergic reaction even though there was no more TPA. This time I wasn’t as sweaty but I was still nauseous and couldn’t feel my face. Still scary, but less so because I knew what was going on. The next day, after being disconnected from my pole for a while, the nurse flushed my line and I had a very mild reaction, just nauseous this time. Since then, I’ve been fine, so we’re thinking whatever was stuck is all gone now. Either way, the doctors said I’m not going home with my PICC line because at home it’s harder to make sure there aren’t any problems. My last chemo that I need through the PICC (I get a new line at the end of the month, I just don’t know what kind yet) is scheduled for Monday, but if my ANC is high enough to go home before then, it sounds like I’ll get the medicine a little early so they can take out the line. It’s been a fun few weeks but a shower without a cover on my arm will be nice! I’ve been sleeping a lot (or trying, my steroids make it hard to sleep well) but I’ve been keeping pretty busy while I’ve been awake. I’m watching the first season of Nashville again in preparation for season two starting next week. The internet is slow but it's enough for skype/google+ which is great for keeping in touch with my far away friends. I also had a surprise visit from my boyfriend on Wednesday, which happened to be hospital bingo day so he got to play too. One of my parents is always here and I’ve had a few brave visitors who don’t mind the yellow gowns and masks. My two online classes at Drexel start on Monday and I’m definitely looking forward to having something to do. We’re still working out getting rid of my housing contract and all that fun stuff but it seems like I’m set for classes. I’m also still working on The Triangle, Drexel’s newspaper, from off campus. Doing layout with hospital wifi was slightly painful at times but it was great to get back into it. Not moving in tomorrow is going to be tough, but it's nice not to be completely disconnected even while I'm off campus. If you’re feeling bored, text, scramble/words with friends, ruzzle, or snapchat me! Entertainment is always appreciated and I’ll reply when I'm not asleep. I also just joined the Apple world with an iPad mini from my wonderful cousins and family, and will have FaceTime figured out at some point. I’d work on that now but it’s sitting right next to a box of delicious chocolates that I’ve already eaten too much of today… Sorry I’ve taken forever to get this all updated but I think that’s finally about all the news I’ve got! I know I’ve been saying this a lot but I really am surrounded by the greatest group of people, and have no idea where I’d be without you guys. Love you, and thank you, thank you, thank you for all of the thoughts, prayers and support.
1 Comment
Natalie
9/26/2013 06:26:52 pm
I appreciate reading your updates and those your mom sends. Still thinking and praying for you each day. If you take any literature classes and need help (not that you would), I would be happy to help!
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
April 2022
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