Merry Christmas Eve! I originally started this update on December 13th, but clearly I didn’t finish it. Today I finally have plenty of time to write and so many updates that I really can’t wait any longer! My last update was the day after my transplant (day +1) and today is day +18! I still have a while before day +100 when I get to go home, but so far the time has passed fairly quickly and I’ve really enjoyed reading a loop from my countdown chain every night. The variety of entries has really impressed me – I’ve gotten recipes, nerdy pickup lines, jokes, fun facts, websites, random childhood memories, and medical advice (when in doubt, more morphine) just to name a few. Since I’m so far behind on updates, I’ll include dates so things make a little more sense. On the 8th, I enjoyed watching the snowstorm roll in. In less than five minutes, the city skyline I can normally see quite clearly disappeared completely. The main intersection in front of the hospital looked really cool from all the turning traffic and my dad and I went down to the main level to get a closer look. There are lots of plants outside the main entrance, and they looked awesome covered in snow! The main hallways were noticeably emptier than they usually are on the weekends which was nice – not as many germs! As a “birthday” present, I got another beautiful edible arrangement. Unfortunately, the past few times I had tried to eat fruit I had thrown up so I decided to wait a bit to eat it. On Monday (the 9th), I was ready to dig in…and chocolate covered strawberries tasted like cardboard. Chocolate covered strawberries tasted like cardboard. Let that sink in. At that point, I decided I should go ahead with the feeding tube. Everyone said it is easier and less painful to get earlier, and it’d take away the stress of having to count calories and protein. Plus, I was getting my last chemo (!!!) on Monday and Tuesday so that was going to make me more nauseous and mess with my taste buds even more. It seems strange that I got chemo after I had new cells, but apparently they weren’t in my bones yet and the additional chemo helps reduce Graft vs Host Disease, which can be varying degrees of bad but in general less of it is better. With a little encouragement from my friends, I finally told my nurse she could place a tube. She really likes giving people NG tubes, which we decided is a little strange but at least she’s had lots of practice. It was a pretty miserable experience. The tube isn’t huge, but it’s big enough to be uncomfortable. My nose wouldn’t stop running (just in the left nostril) because it saw the tube as a foreign object. It took so long to get the food pump and the food to my room that I actually felt really hungry (which I haven’t felt in a while because I’d been forcing myself to eat so much). I didn’t want to eat anything because it hurt to swallow with the tube in my throat. I hated it, but everyone said I’d be used to it in a few days. All of Monday and half of Tuesday I sat around, mostly silently because talking wasn’t fun with the tube either, and wanted nothing to do with anything. Eventually, I snapped out of my mood and was back to walking some laps (but no more than 10 at a time or my nose would run) and occasionally talking and smiling. I could swallow without terrible pain, though overall I was still unhappy with the tube. On Wednesday, since I had been tolerating the slow tube feeds, they decided to speed them up. Somewhere along the line my anti-nausea meds had been decreased since I was feeling okay. This combination was too much, and I threw up on Wednesday morning. Formula food that isn’t meant to be tasted does not taste very good, and my tube came out with it. Throwing up isn’t fun. Throwing up with a tube hanging half out of your mouth and half out of your nose is even less fun. Luckily, I had the brilliant idea to cut the tube near my mouth so only a short piece had to be pulled back out through my nose. The decision about whether to name this maneuver after my first or last name has not been finalized yet. The freedom was fantastic. Not having that tube felt so good that I told my nurse I wasn’t getting another one that day. I still didn’t have any of the mouth sores that everyone warned me about and said I’d want the tube for, so I decided to wait until I had at least one. I could sneeze and cough without worrying about dislodging the tube, my nose stopped running, and I was instantly happier. Food still tasted awful, but it was better than the tube. Sometimes you just need a little perspective. Cashews became my staple calorie and protein source and that’s what I was sitting here eating when the lead transplant doctor walked in the next night. Most people that know me know that I’ve always challenged myself – taken difficult classes, joined lots of clubs, and most recently completed an 8 mile hike in Hawaii when my undiagnosed leukemia shouldn’t have allowed it. I like exceeding my expectations and those of others, so when the doctor told me I was exceeding all of his expectations, I was ecstatic. At day +7 I still felt completely fine and had no reason to need another tube. Each night I would go to sleep, dreading the next day a little bit because I was sure that would be when the sores would start. The doctor told us the worst would be days +3 to +15, so I still had a week to get the sores and need another tube. Finally I told one of the doctors during morning rounds that I was waiting for the sores to hit and he told me even better news than exceeding expectations: if I didn’t have the sores by then, I was part of a small minority of patients that wasn’t going to get them! He also told me I’m a transplant poster child! I was exceeding the doctors’ expectations left and right that week. People have signs of them by day +4 if they’re getting them, and by day +7 they’re so bad that most people are on a morphine pain pump. I’ve heard people say later in life you regret the things you didn’t do more than the things you did do, but I think this is an exception and I’m thankful I missed that experience! I’m currently working on a list of all the helpful things people told me going into transplant so that I can pass the advice on to two other campers that will be getting transplants in early 2014. Over the weekend, I had lots of visitors to keep me busy. I didn’t know a lot of them were coming but seeing smiling familiar faces show up outside my door was fun and I got two camp-themed Christmas ornaments to add to my trees! I’m sure more interesting things happened that weekend but I can’t think of anything else particularly exciting right now. I walked lots of laps. At that point I was doing 30 laps a day which is two miles, and I’d do three or four flights of stairs a day if I got disconnected from my pole. Also, my fun to-do lists keep getting more elaborate so that keeps me busy. One task was to walk laps without stepping on the tan floor tiles. Luckily, I tried this while I was disconnected because it’s the only way I could do all the leaping necessary to cross the seas of tan. One spot was so wide that my dad had to stand in the middle so I could use his foot as an island to make it across. I got a lot of strange looks in the hallway as I weaved back and forth from side to side and walked awkwardly close to a few patients’ doors but I completed the challenge! The next day insisted my nurse try it, because when she wrote it on the board she had only looked at half the hallway. She got lucky and happened to be carrying an isolation gown to use as an island. My siblings visited that night and also completed the challenge. One of my best friends came in with them since she got home from college and it was wonderful to be reunited. On Monday afternoon (I’m up to the 16th now!), I got a little dizzy when I stood up to go to the bathroom but the black spots faded after a few seconds and I felt fine. Anyone who has spent a lot of time with me knows that it’s pretty common for me to get dizzy if I stand up too fast or anything. Even so, I told the nurse and warned her that I might need blood soon. She told the doctors, but my red count wasn’t low enough that they thought I needed a transfusion. During the night, I got up to go to the bathroom. I don’t remember why my mom was awake but it was a good thing she was (sounds unfortunately familiar doesn’t it?). When I went to wash my hands I sat down on the little bench that’s in there in case I need to sit to shower and said something about just resting my eyes. When I fainted at home, my mom just waited until I was conscious again and helped me back to my bed but this time I was connected to my pole by lots of tubes so it was much more complicated. My mom didn’t want to leave me to get a nurse because there is not a single soft surface in the bathroom and I definitely would have fallen. Luckily, the emergency pull string in the bathroom works. It doesn’t just call one nurse, it pages them all and sets of alarms in the hallway and my room was full of people very quickly. They increased my fluids to help with the dizziness and my mom, nurse and I all insisted that I needed blood, even if my number wasn’t as low as they usually wait for it to get. The resident eventually agreed and I got a unit of blood a few hours later (hospital time). I was labeled as a fall risk and for a while I had to have a nurse in here every time I went to the bathroom. This was a little bit annoying but I felt much safer and once the dizziness faded, they let me get up by myself even though my door still has a wonderful pink fall risk sign for the first time ever. On Tuesday, Santa came to Hopkins in a bright red helicopter! He got closer to the edge of the helipad than I would’ve wanted to but everyone enjoyed watching. In other news my temperature was above normal but not quite a fever for most of the day. Fevers can be very serious but they usually just mean lots of blood cultures to see what’s causing them and then lots of antibiotics. They have to take blood from every line I have to make sure that there isn’t an infection in the line. Right now I have three lines: one for my port and two on my Hickman. Every time they do cultures, they take 20cc per line so there is plenty to test for both aerobic and anaerobic bacteria (some like oxygen and some don’t). Considering I had been dizzy before and only got one unit of blood, I didn’t really have much to spare and wasn’t happy about giving them so much. Oh well, they figured out what the problem was, and it grew back in the blood from all three lines which meant it was in my entire bloodstream, not just one line. The rotate each dose of antibiotics into a different line, which meant they were all hooked up. I was still getting lots of fluids and I had a handful of tubes to carry wherever I went. Luckily that was usually just the bathroom. I figured if I got dizzy walking ten feet, I probably shouldn’t try to walk two miles. The nurses (and my mom) fully supported that decision. I kept taking Tylenol because everyone told me I felt really hot (I felt comfortable enough but whatever). My fever would break and I would get really sweaty, I’d feel fine for a little while, then I’d steadily get cold as the Tylenol wore off and my fever came back. I hated all the transitions so eventually I decided I’d rather just have a fever and use lots of blankets and feel cozy and warm. When you get a new antibiotic, they check temperature and blood pressure before during and after to make sure you don’t have a reaction. I seemed to be fine, but about an hour after the antibiotic finished, I was in bed shaking so my mom was trying to warm me up. I felt cold so I thought it was just shivering but after a while she decided it wasn’t normal no matter what I said and she called the nurses. A small crowd assembled again. As it turns out, I was rigoring. I guess it was scarier for everyone watching than it was for me – I just felt cold but really I was uncontrollably shaking to the point that neither the machine nor the manual blood pressure methods could get a reading. One of the nurses asked if I knew where I was, which I thought was a silly question because again, I just felt cold. Not long after I stopped shaking (thanks to more fluids), two of my friends from camp showed up. A distraction definitely made me feel a little better. My nurse brought me liquid Tylenol (why, we still have no idea). As a pretty tall 19 year old, I needed not one but two syringes of it. I threw the first one up immediately and requested pills. Grape flavored liquid Tylenol is not my friend. I’m pretty sure the amount of water I used to take two pills was less than the amount of Tylenol I was supposed to take. Sometime between Wednesday night and Thursday morning, my fever went away. The antibiotics continue but they’ve stopped taking all my blood because the cultures came back negative. This was good timing, because I needed all the energy I could get for my busy weekend! On Friday, three of my best friends came in. The clowns stopped by and gave one of my friends two purple medical gloves wrapped in a paper towel since it was her birthday. My friends enjoyed lots of the yummy food I’ve accumulated that just tastes like cardboard to me. Also, my boyfriend was coming to visit that day and they wanted to meet him. I loved having so many of my favorite people in the same place at once but it was absolutely exhausting. Since I felt okay (no dizziness or fever), my friends took my mom home and left my boyfriend to take care of me for at least one night. I know it was nice for the rest of my family to be home all at once and for my siblings to have both parents together. They knew I was in good hands – he even found the “Karen is resting, please do not disturb” sign that my sister made me and hung it on the door even though nobody had told him about it. We listened to lots of music, played lots of board games, and all of the nurses love him. He’s also very good at keeping my friends’ plans a secret: on Friday night six of my friends from camp showed up with gingerbread house kits and posters and presents. I was shocked. I had seen one of them when he was at Hopkins for clinic but I had no idea the whole crew was coming that night. It was great to hang out with everyone, especially since I couldn’t go to the annual gingerbread house decorating at Cool Kids Campaign. After they left, I barely had enough energy to brush my teeth before I fell asleep. On Saturday, I had even more unexpected camp visitors! I loved talking to all of them and I’ve also been enjoying the macaroons that one of them brought. Calories! As it turns out, she’s also friends with one of the doctors (resident I think – I can never actually keep track, they all know way more than I’ll ever know and they’re doctors in my mind) on the floor right now from med school! It’s such a small world. My dad offered to come in and spend the night but I felt fine and my boyfriend was willing to stay another night. I almost sent him home after he got FOUR yahtzees in one game but I let him stay. My temperature was higher than normal again (but not a fever) and it was making me nervous again. However, my nurse told me that at this point, it might be an engraftment fever, not a bad fever. One of the doctors said if we didn’t start seeing new cells by day +18, they’d start to wonder what was going on and it was day +15 so that made me feel better. I went to sleep, exhausted again from a busy day. My nurse drew labs around midnight as usual, and she brought the results summary in when she did vitals around 4:30. She was right: ENGRAFTMENT! My ANC was 20 and I had lots of monocytes which are a good sign that the ANC would go up more the next day. I was too excited to go back to sleep so I started spreading the news: first to my family and then to some of my friends. I resisted the strong urge to jump on my boyfriend’s bed in excitement because I told him I’d only wake him up in an emergency. Of course he would have been fine but I told him when he woke up from a beeping machine a little bit later. I absolutely cannot describe my excitement that morning, it was the best early Christmas present ever. Not that I was super worried the cells wouldn’t grow, but that’s always a possibility and I tend to overthink things. My red count was getting low again so I got two units of blood. We were sitting here playing board games when all of a sudden my boyfriend noticed blood splattered all over the floor. Fortunately it didn’t seem like I lost too much but it was very strange and another one of those “I’ve never seen that before” moments. (BLOOD PIC). My uncle, aunt and their kids came to visit for a little bit that day which was fun and one of my friends came in with her mom later that evening and I taught them how to play yahtzee! Even though this paragraph is kind of in the middle of the post, I’m writing it last because I’ve been debating whether or not to include it this whole time. It’s probably going to sound like TMI but otherwise I feel like I’m making transplants look easy and painfree and that is not the case. Because my counts have been dropping for weeks, I’ve been on lots of antibiotics (even before the fever) to help keep me from getting sick. If you’ve taken antibiotics before, you may understand that they don’t get along with your digestive system. Basically, for me anyway, antibiotics = diarrhea. This would be fine for a few days but it gets old after a while, especially with hospital toilet paper. The nurses gave me baby wipes to use and the doctors ordered me Butt Paste. Think diaper rash ointment. Sounds like fun right? The nurses and one of the doctors would look at it most days to make sure it wasn’t getting worse. I understood the logic completely, because if my skin was open and germs from my butt got in my blood that would be bad with no immune system. The first few days that I had cells were incredibly painful because I guess they all rushed to the area. Anyway, butt paste works wonders and now that I have some white blood cells, it’s actually healing and I feel much better. I guess butt pain is still significantly better than mouth sores requiring a morphine pump, but that didn’t make sitting/standing/walking/basically any position any less painful! I was expecting a relaxing day on Monday (yesterday! I’m all caught up!) which was fine with me after such a busy and exciting weekend. I woke up early and had trouble going back to sleep so I was ready for an early nap. Much to my surprise, my mom didn’t make me eat something for lunch before I went to sleep but I’m not complaining! Not long after I woke up, the door opened and seven of my friends came in: “SURPRISE!” I’ve known them all since middle school or before and we got split between two high schools so we always have a little Christmas party. I asked if they were still having one this year and everyone told me no, suggesting that nobody had planned one and it just got lost in the rush of finals and the holidays. Nope, they’re just all really good at keeping secrets! They even brought an extra present for a white elephant gift exchange so there were enough since clearly I wasn’t prepared. It was a fantastic surprise and I was so happy to see everyone. We usually decorate gingerbread houses, and since I still had two gingerbread house kits that I hadn’t had time for over the weekend, we had our annual competition! The nurses came in to judge, and since nobody wanted to transport the houses home, I offered them as decorations for the nurses station. That’s where they are, and everyone loves them! Before my friends left, they presented me with a scrapbook. They contacted so many of my friends from college, camp, high school, my family, family friends and more and compiled letters and pictures from everyone. There’s also a list of tons of people who joined the Be The Match registry. I know some of them, I recognize others as friends of friends, and others I have no idea who they are but I’m glad they heard my story and decided to join. Anyway, reading all of the notes, some from people I haven’t talked to in years, was incredible. To everyone who submitted a letter, I can’t thank you enough. I hope everyone, at some point in their life, has someone tell them that they’ve changed their life. I don’t think we stop and think about how someone has affected our lives until we don’t see them anymore or they’re sick or there’s an assignment where we have to talk about who we look up to or something, but if you stop and think about it, even someone you’ve only had a few conversations with probably affected you in some way. My labs showed an ANC of 160 yesterday which was an exciting increase from the day before. The doctors told us that a lot of people have a fluctuating ANC for a few days before it starts to steadily increase but it seems like I may have skipped that phase. We’ll see! My ANC is supposed to be 500 for three days before I can leave the hospital and move to the apartment but we were allowed to get the key a few days early so my family moved a few things over last night. This morning, I was up to 290! Making progress! Today I finally had the relaxing day I was expecting. I went down to the library where they had lots of decorated mini Christmas trees to give away. I decided since the other two trees in my room are borrowed, it wouldn’t hurt to get one of our own. Each tree has a theme, and the one I chose is Christmas around the world, so it has a ribbon that says Merry Christmas in lots of languages, a bunch of little flag ornaments, and then some typical glass balls. There are also little battery powered lights. My sister said it’s not fair that I have three trees and they only have one at home but I pointed out that all of mine combined are still significantly smaller than the one they chose for our house. Speaking of my sister, she’s doing well post-transplant as well! She was out in the snow with her friends a few days after and she can play basketball again now. She stopped taking the oxycodone without even switching to Tylenol and even though she’s still a little paler than her normal self, nobody would really notice if they weren’t looking. Some fun additions to my room include a mini air hockey table (a “birthday” present), the third tree, lots more drawings from my nurses, a neon green monkey pillow pet, an incredibly warm fleece blanket with cats on it, and lots of food. I also got a box of 50 paper snowflakes from one of my best friends who I think was putting off studying for finals but I’m waiting to put those up in the apartment. I think that’s about all my updates for the past few weeks (over 4000 words later). I added some more pictures to the photo gallery since this update is already so long that I don’t want to work them all in. Now we wait for my ANC to be high enough to head to the apartment. Right now, they watch closely for Graft vs Host Disease symptoms and I’ll be in clinic at least three days a week for bloodwork and to get blood and platelet transfusions. My new bone marrow won’t be able to produce adequate amounts of those for a while (so if you can donate blood, please do! Somebody might be passed out in the bathroom and really need it!). We’ll be celebrating Christmas at Hopkins tomorrow. It’s not ideal and I certainly will miss seeing the whole family in PA but I’m glad that I feel good enough to enjoy the holiday and I know the nurses who have to be here for the holiday will make it as much fun as possible. Thanks again to everyone who has been supporting me and my family, whether through messages or food or a visit or anything else! It means so much and we love you all! I hope everyone has a very merry Christmas (if you celebrate that) and a happy and healthy new year!
16 Comments
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! |
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
Categories |