A quick warning before you get too far into this: it’s a long update! It’s been a week and a half since I last wrote an update and I’ve had some very busy days. Since my last update, I’ve moved into my new room, gotten a week of prep for my transplant, and yesterday I actually got my transplant! Last Tuesday (think back to before Thanksgiving, November 26 because that’s where I left off), I continued shopping with my mom and aunt for gifts for all the cousins. We also got all the food for our small Thanksgiving - definitely more than necessary for seven people but it was all delicious. One of my cousin’s friends was in the area so she came over and we finally had an ice cream date that we’d been planning since the summer. Yay fattening foods! That night, one of my best friends got home from college so she came over to visit. We played dominoes with my family which was a lot of fun as always. Unfortunately, there isn’t a table big enough for Chicken Foot in my hospital room and I can’t imagine the looks I’d get from the nurses and doctors if we tried to play on the floor. I couldn’t eat after midnight and couldn’t drink after 7am because of my Hickman surgery the next day. My surgery was scheduled for around 10, so that was a long time not to eat, especially when I’m supposed to be gaining weight. I missed breakfast and lunch but managed to eat four servings of my favorite pasta for dinner. The Hickman surgery used twilight sedation instead of general anesthesia so I was less nauseous after. I woke up faster and wasn’t as sore because the surgery wasn’t quite as intense. The line comes out of me a few inches below my right shoulder but the tube tunnels into the jugular vein in my neck. As always, the pre-surgery risks were a little scary: bleeding to death, deflating my lungs, etc. Luckily, surgery went well, even though the surgeon went to a rival high school. I’ll have the Hickman for a few months but I still have my port so the Hickman will be coming out as soon as possible. Since it’s partially outside of the skin and always requires a dressing, it’s more of an infection risk than the port and it’s also more of a pain. The dressing can’t get wet so I have to cover it to shower and I also have two lines hanging out of me similar to the PICC line. I’ve been wearing tank tops so the lines are easier to access than they are with a tshirt. It seems odd in the winter but it’s been working so far. Thanksgiving was quiet and relaxing, not the huge party I’m used to but it was still enjoyable. I ate lots of food and had enough energy to walk down the street to visit some friends. Walking there and back is about a mile and a half of hills which weren’t too difficult for me, much to everyone’s surprise. We got to skype with some of my dad’s family which was fun even though technical difficulties meant we were only seeing each other on the computer and had to use the phone to hear each other. It was nice to see them all since it’s been a few months! Black Friday shopping sounded a bit too germy and we had our shopping pretty much finished anyway. We spent the day relaxing and I got to see a lot of my friends who were home for break. They helped me pack some of my stuff, which made it less stressful and more enjoyable. I went on another walk down the street as well. On Saturday, I wrapped a lot of my cousins’ presents and continued packing and cleaning my room. I didn’t want to leave it a huge mess while I was gone in case anyone visits from out of state and stays there, plus it’s always nice to come home to a clean room. Packing for the hospital isn’t too hard – yoga pants, sweatpants, more yoga pants – but I also had to pick out what I’ll want my parents to bring to the apartment for me when I can leave the hospital and mentally note where everything is so I can describe it to them. One of my friends came to visit and say goodbye until winter break and then I collapsed into bed. I slept well but got up early to finish packing. Between decorations, food (I haven’t eaten any hospital food other than bacon so far this stay), clothes, games, books, and other miscellaneous things, the car was pretty full. I left my mini Christmas tree at home for one of my parents to bring in later since I had plenty of other decorating to do in the meantime. My past few hospital stays have been in rooms 18-21, which are all in the same hallway. This time I’m in room 5. The person at the front desk told us it’s the VIP suite, which we thought was a joke until we walked in. It’s huge and there are three windows with a fabulous view of the city skyline including the sunset! SUNSET PIC Prime real estate right here, thanks to my amazing nurses! Each room has to be deep cleaned every 30 days, so long-term patients often have to switch rooms. However, one of my nurses made sure they deep cleaned this room the day I got here and hopefully I won’t be here long enough to have to move. I unpacked my bags right away, putting all my clothes in the drawers and all my entertainment on the shelves. I hung my window clings on my door and window and my dad and I wrapped the countdown chain around the big support pole in my room. I had some wall art stickers so I put those between the rings. It’s all so festive! My nurse came in while I was standing on the couch leaning over to put the window clings on and determined that I’m not a fall risk. I’ll be posting another blog post with pictures of my room because I really think that deserves its own post and this one is long enough as it is. I needed a lot of fluids before I could get my chemo because it was a higher dose of the same medicine I got about two months ago that can make the bladder bleed. Around 5, they hung the chemo and I walked laps for a while before eating dinner. I still felt pretty good that night and my appetite was normal. I hadn’t gotten enough sleep the previous few nights at home so I slept pretty soundly that night. Unfortunately that meant I wasn’t waking up to pee as often as they wanted me to be to flush out the chemo. Their solution: a drug that makes you pee. Believe me, it worked. After I got that, I was up for almost three hours because I had to pee every 15 minutes. So much for a good night’s sleep. On Monday morning, my already- grumpy-from-a-lack-of-sleep self got a visit from the dietician. I was expecting her to offer some advice about what to eat when I got mouth sores or when my mouth was dry from radiation or something but I was wrong. A quick summary: “Probably nobody has told you this but you can’t eat enough to maintain your weight so you’re going to need a feeding tube. Only one person has gotten through transplant without it.” Great. She was right that nobody had mentioned it; until then I was under the impression that the Hickman was necessary for nutrition supplements. As it turns out, they prefer not to use the supplements through the Hickman if they don’t have to because then the nutrients are going into the blood and being processed by the liver instead of the digestive system. The digestive tract will be hurt from the radiation, and having food in it helps heal it faster. With the mouth sores from the radiation, it will be painful to eat, so the tube is helpful and more natural for the body. These explanations came from the doctors more than the dietician. She seemed to think I should get the tube in as soon as possible. I finally accepted the fact that I’ll need a tube eventually but I’m trying to put it off for a while. I don’t want to be that dependent until absolutely necessary. My dad and I calculated that it takes 15 laps around the floor to get to a mile and we did about 20 laps that day. Someone had calculated the magic mile number in the past, but the nurses didn’t seem sure. Now, the news must have spread because multiple people have seen me walking since then and told me that 15 laps is a mile. I haven’t told any of them that I counted the number of 1 foot square floor tiles to figure that out because they’d probably wonder why I didn’t just invest in a pedometer. Monday was my mom’s birthday, which I was disappointed not to be home for. However, my dad and I joined the festivities at home via Facetime. To make the day even better, a friend from camp visited in the afternoon and I didn’t need the peeing medicine that night! I asked my nurse to wake me up if I wasn’t peeing often enough on my own, which worked wonderfully. My toe (yes, the same toe that was having issues before) hurt a little bit so they put me on antibiotics to be safe and suggested I soak it again. My nurse called four pharmacies in the hospital and none of them had Epsom salts. Ridiculous, but true so my mom brought some from home the next day. Tuesday was the start of radiation. I woke up feeling pretty nauseous, the two days of chemo really caught up to me. The morning radiation was really quick, but by the time I got back to my room I was exhausted. I felt like I’d been zapped, and I guess I had. However, radiation wasn’t supposed to take my smile, happiness, and overall personality with it too. My nurse came in and immediately knew something was wrong because I wasn’t acting like myself. I was more miserable than I’d felt in a really long time and I couldn’t even pinpoint what was wrong. I just knew something was. She did my vitals and the thermometer showed a fever. Fevers are a pretty big deal, so she wanted to double check. A minute later, my temperature was normal. Even so, I got another antibiotic and some Tylenol to be safe. They also had to do cultures to see if the infection was in any of my lines, including my port. Cultures involve taking a lot of my blood which I wasn’t very happy about but I still haven’t needed a transfusion so I guess I have some to spare. I got escorted down to radiation because I didn’t think I’d be able to walk over (it’s all the way across the hospital). The afternoon dose of radiation took longer because they had to shield my lungs. Of the six doses I got, three had to be shielded so that my lungs wouldn’t be as damaged. This was not a simple process and made the afternoon doses take considerably longer- up to an hour on each side. They drew approximations of my lungs on my skin to help them line up the machine properly. The drawings are small on my back for some reason, but a picture of the lungs on the front wouldn’t be appropriate to post. I asked for a bathroom break between the sides since I had gotten a lot of fluids that morning. It was also a relief to move around after staying still for so long in the freezing room with bare skin (they can’t see the drawings on my skin if I’m covered in blankets). At some point during the radiation, I actually started to feel better. I was shocked since I felt so terrible after the first dose but I guess the chemo was finally clearing out of my system. I didn’t walk back from radiation but I walked some laps later. That night, I felt fine but when my nurse did vitals, the thermometer once again read a fever. We didn’t believe it, so she put another cover on it and tried again. Back to normal. She got another thermometer. Still normal. The fever-reading thermometer has since been removed from my room and the doctors even stopped the antibiotics that I’d started because of the fever. They also cancelled the other cultures that were supposed to be done 12 hours later. Wednesday was another day of radiation. It was much quicker than the first day because I knew how to get into the proper position and I still had lungs drawn on me in blue marker from the previous day. I got back from my afternoon radiation just in time for a few rounds of hospital bingo, where I won Taboo! I really like the game but it requires four people so I’m waiting for my friends to finish their finals so they can visit. I also may be able to play with some other people on the floor; unfortunately, I know quite a few of them. I’m glad I know them but it’s just unfortunate that they’re all here now too. That night, my mom and I assured the security guards I wasn’t escaping with my pole when we went down to one of the bridges to look up at my room. If you’re ever driving past Hopkins in the dark, look up! My sister had an appointment on Thursday for a few last minute tests and pre-op instructions. We got graham cracker house kits from child life so we worked on those for a while. We also decorated one of my trees. I have not one but two fake mini Christmas trees in my room now! I borrowed one from a friend a few weeks ago but since I didn’t bring it in right away, one of my doctors brought hers in for me too. Nobody seems to mind that I have two, and there’s plenty of space in my room! My morning dose of radiation was uneventful, but the afternoon was quite an adventure. First, I was supposed to be down there about an hour early to meet with the doctor. As it turns out, the doctor only needed to see me if I had questions, which I didn’t. One patient was taking longer than anticipated so I got to go back up to my room for a while because of the delay. Once it was my turn and I was all lined up to protect my lungs, the machine broke during my radiation. There I was, laying completely still facing the wall while the engineer came in and fixed the machine behind me. I could hear the clanking but had no idea what was going on. Eventually, it was working again. I didn’t ask for a bathroom break because I wanted to get it over with and the day before had been really quick. That was a mistake. The second side took an unusually long time to line up and by the time they actually started the treatment my entire left side was asleep, my knees hurt more than I can describe, and I really had to pee. During most of my treatments I had focused on trying to make food sound appealing or convincing myself the feeding tube will be a good idea, but that time all I could think was “breathe in, breathe out, don’t cry.” By the time they told me I was finished, a few tears had escaped and I eventually just lost it. Hopefully I managed to stay still enough to protect my lungs. After I stopped crying, I got to ring the bell that everyone rings when they finish radiation. I had finished just in time that my parents were still there. They headed home right after for my brother’s NHS induction and I spent the evening with a family friend trying to eat as much as possible and enjoying The Sound of Music Live on TV. It wasn’t as good as the original, and I know a lot of people have been hating on Carrie Underwood, but I absolutely love her and really enjoyed the show. Yesterday was the big day! Happy new birthday to me! The clowns stopped by and sang me a new birthday song. I showed them my singing birthday hat and they weren’t very happy – they saw it as a job threat. My sister’s procedure was scheduled for 7:30am which meant she woke up very early but at least not eating after midnight didn’t bother her. My brother came in later in the morning so the whole family got to be together for a while. Since I’m so much bigger than my sister, they had to take a lot of bone marrow out of her. She’s got four big holes in her back, but she’s happy they’re symmetrical. She looked very gray when I first saw her, since her hematocrit was low. She could have gotten a transfusion but she’ll recreate enough cells in a few days so she didn’t. She was in a lot of pain which was expected but the pain meds have been working well and she was up in my room smiling in time to see her cells go into me. Three of the four nurses on my team were here at the time, so they all came in and we took a bunch of pictures. It was a nice little birthday party, and everyone other than the clowns enjoyed my new singing birthday hat! My sister’s bandage started oozing blood, so it was good she was still here. The nurses dealt with it instead of sending her to the ER. Today, I got disconnected from my pole in the morning after my antibiotics. Since I still feel well enough to eat, drink, and take my pills, there isn’t any reason for me to be attached to a pole. I’ve been focusing on eating, since the dietician said I need to eat at least 1700 calories a day, including 89 grams of protein. The protein goal is so high because proteins have amino acids which will be the building blocks of all the new cells my body needs to build to repair itself from all the chemo and radiation I’ve gotten recently. Sometimes I’ve been having trouble keeping my food down but I’m doing my best and even the dietician recognized my work the other day. I definitely eat more when I’m distracted, so my dad and I have been playing games during meals. Radiation affects the salivary glands so my mouth is really dry which makes food taste strange and makes it tough to eat dry foods like crackers and bread. There has been so much to be thankful for this past week. I’ve gotten so many messages and words of encouragement, I have a wonderful room and a supportive family, a sibling match, great nurses and doctors and I’m handling the treatment pretty well so far! Every night before I go to sleep, I take down another ring from my countdown chain and I’m so thankful for all the love everyone put into their messages. Whether they’re a line or multiple pages, anonymous or credited, they’ve left me falling asleep with a smile on my face every single night. I’m saving them all but I still haven’t decided what I’m going to do with them when I’m finished. Luckily I still have three months until I finish the chain so I have a while to decide. I’ve been really busy, so please don’t be offended if I don’t reply to your messages for a few days! I’m catching up as fast as possible but between eating, sleeping, treatment, spending time with my family and walking laps, there isn’t as much leftover time as you’d think. I haven’t even watched Wednesday’s episode of Nashville yet, and it’s Saturday night! One of my nurses keeps writing me to-do lists with everything from fun stuff, like listening to Christmas music, skyping a friend, and decorating, to harder stuff, like cleaning my room, eating, and eating some more. I’m going to make a list for her too but I haven’t thought of enough good stuff yet. Anyway, as you can see from this crazy long update, I’ve been busy and it’s been mostly good busyness! Tonight, my nurse came in and pointed out how unusual it is to be disconnected from my pole on day +1 (first day post-transplant). If the others are disconnected, they probably didn’t use their freedom to walk two miles and four flights of stairs like my dad and I did today. Unfortunately, I won’t be feeling this good for long. My new cells have to find their way into my bones and start producing cells for me and that process takes a few weeks. As my current mouth cells die, there won’t be any to replace them for a while, so I’ll have horrible mouth sores and probably the dreaded feeding tube. I’ll need lots of blood and platelet transfusions until I can make my own (so if you can donate blood, please do!) and I’ll be hoping that my body and my sister’s cells continue to get along so there’s minimal Graft vs. Host disease. I get two more doses of chemo on days +3 and +4, which somehow helps reduce GvHD but will also bring back the nausea. The transplant was just the beginning of this journey, so thank you, thank you, thank you for the extreme love and support so far! You are all fantastic! I love visitors, as long as you’re not sick! I can’t predict how I’ll be feeling at any given date or time, but if you let me know when you plan to visit I’ll do my best to be awake! As always, thanks for reading this insanely long update and look for another one soon with more pictures of my room all decorated! Also, for those of you taking finals in the upcoming weeks, I wish you the best of luck!
4 Comments
12/8/2013 05:19:16 am
Wow! With all you are going through, you have kept your superlative writing skills. Hang in there! Weather permitting, I'll see you tomorrow. Call me (or contact me by some other device) if you need anything.
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Lia Parisien
12/8/2013 03:15:06 pm
Allie has been sharing your experience with me, and we continue to marvel at your optimism, energy, maturity, determination, and wonderful writing! You are a model for peers and adults alike. Your little sister has been very brave, but obviously she has learned a thing or two from you. Keep up the fight...we are all pulling for you!
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Natalie Shollenberger
12/10/2013 08:42:52 am
I enjoy reading your blog. You seem to be doing well and your attitude amazes me! Your positive outlook will definitely help your body heal and grow stronger. Thinking of you often and continuing to pray for you!
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Amy
12/25/2013 06:30:57 am
Karen, I'm so happy to see that you are doing so well. I hope you a wonderful Christmas and continue to get better!
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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
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