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
donna larkin
12/24/2013 04:15:18 pm
merry merry Christmas Karen. may the good progress continue. much live always
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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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