In college, you always hear that you can only pick two – grades/work, sleep, or having a life. I know lots of people who quickly decide to give up sleep, and they can get by on less than 6 hours of sleep so it works for them. I am not one of those people. If I don’t get at least 7 hours of sleep, I’m a mess. I’m irritable, emotional, and can’t focus on much of anything or eat a real meal. It’s just bad. That being said, sleep is definitely one of my priorities because without it, the rest of my activities fall apart as well. An occasional night with little sleep is okay, but too many nights in a row and I go downhill fast.
Luckily, I’m pretty good at managing my time so I haven’t really had to give up much to accommodate my body’s need for sleep. When I first went back to school, I was still very weak so my social life was limited by my energy level but that got better throughout the quarter. It was also a bit of an adjustment to start working full time for my co-op, but again I adjusted in a few weeks. It helps that my body has a great natural alarm clock – if I wake up at the same time for at least two days in a row, it’ll wake me up at that time every day without an alarm. This can get really frustrating when I just want to sleep in a little, but it’s nice to worry less about my alarm and easier to get on a schedule. Sometimes I envy the people who have so many more hours in the day because they need less sleep, but I know I’ve put my body through a lot and the least I can do now is let it rest when it needs to. How much sleep do you need? As much as I’ve enjoyed the A-Z Blog Challenge, I am glad it’s finally May so I can rest a lite more! I’ll have a reflection post up this week and a medical update post over the next few weeks as well. Thanks for reading!
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Today’s topic was suggested by my friend whose last name happens to be Yard. I could write a whole post about her family, since I’ve known them since first grade, but she actually wanted me to write about all the time we spent outside in our yards as kids.
Most of my favorite activities were outside. Nearly all of my friends growing up lived on properties with good sized yards but trees as well. If you didn’t see us at ground level, we were probably up in one of them. One of our favorite games we called car spy. We would watch and listen for cars coming on my street and try to hide by the time they passed my house. Sometimes we adopted variations, where we would pay attention to the colors to solve a mystery or pretend we were in the Revolutionary War and they were the British. If we had a big crowd at a sleepover, we would play German spotlight. Whoever was “it” had to stand at base to count and everyone else went to hide. The person at base would slowly move the flashlight back and forth across the playing field, and if anyone got caught in the light, they were out. The goal was to make it back to base without being caught. This game worked well in most of our yards because there was plenty of space and things to hide behind. We also played it in our basements when the weather wasn’t great for being outside. Playing outside in our yards coming up with games and variations made me much more creative. We could turn anything into a fort (and don’t get me started on our indoor forts, because this post would double in length). The hammock was a boat. We built dams in the stream. We had to complete missions in the pool without Oscar (the vacuum) “seeing” us. When my parents would have people over, we would sit in a big tree by the driveway and shine flashlights around and see how long it took people to figure out where we were. In the last ten years, I know things have changed quite a bit. We had painfully slow dial-up internet and no cable until I was in high school, so I never spent much time on the computer or watching tv. My friends and I would take toys to each other’s houses instead of iPads like my sister’s friends do. Luckily, they still play outside too, but I know not everyone does now. I hope that by the time I have kids, no matter what technology is available to them, they will still enjoy playing outside because it was such an important part of my childhood. When I mention going skiing, most people imagine a big mountain with lifts. I enjoy that kind of skiing too, but I never tried it until high school. I learned how to cross-country (XC) ski not long after I learned to walk because my family has been going on ski trips since before I was born. My grandparents organize at least one big group trip every year. Cross-country skiing is not as hard as the Olympics make it look. On one of our trips, we stay in a lodge at the bottom of a mountain and we drive up to the top and ski along the ridge then down to the lodge, so there isn’t too much uphill. We can ski the 8 miles back to the lodge before lunch, and I’m not saying it’s easy but it’s also not as bad as most people expect. I’ve taken friends who have never skied before and they survived! Really, if you can walk, you can probably cross-country ski. Downhill skis and boots are heavy, but cross-country skis are narrower and lighter and the boots are a lot like normal shoes. Unlike downhill, your feet are only attached to the skis at the front, so you lift your heel and glide. Why would you want to do this instead of just flying down a mountain? Not everyone would, but I enjoy it. There are no lines, and no noise from crowds of people. You can ski anywhere – parks with hiking trails, down the road to a friend’s house if the streets before the streets are plowed, or just around the yard. It’s very peaceful and I love snowy forests. I can take pictures while I ski, and it’s enough exercise that I stay warm (I always need hand warmers and crazy numbers of layers for downhill). I haven’t missed a ski trip since I was born except for in 2014 when I wasn’t allowed to go more than 15 minutes away from Johns Hopkins because I had just received my bone marrow transplant. During my first treatment, we were strongly advised not to go because the place we stay isn’t very close to any hospitals. We went anyway, and I made it almost back to the lodge before I was so exhausted that I held on to my mom’s ski pole and she pulled me back. This year, I was determined not to miss it even though I had no idea how much I would be able to ski since I was still pretty weak in January. The first day, I did a short loop but the second day I went down the mountain (not to the lodge, but down a different trail that we like). I was sore for an entire week after that trip but it was definitely worth it to be back on the trails and I’m sure it helped me build my strength back up. I started this when I found out my leukemia came back in 2013 when I was 19. I wanted a place where I could keep everyone updated at once, instead of explaining things over and over to all of my friends who asked. My mom sent out email updates, but in the world of social media and cell phones, I don’t have email addresses for most of my friends and classmates. Even though most of them were on Facebook, I didn’t want to flood news feeds with long, medical posts. I could post a link to my blog updates, and the people who wanted to read it could click it, and that way everything in one place.
I actually don’t remember my exact thought process when I was choosing the name for my blog, but The Worst Best Thing was a phrase I used in my college application essays. One of the questions asked about a person or event who had a big impact on my life so of course I wrote about my first treatment for leukemia. At the time, I hated it. There’s not much to like about almost 3 years of treatment – the poison, hair loss, spinal taps, missing school and losing friends. Just as I was finishing my treatment, one of my middle school classmates was diagnosed with a different type of leukemia. We became friends and she convinced me to go to a camp for kids with cancer with her. My nurses had been trying to convince me to go to camp since I started treatment but I never wanted to go. Cancer was a part of my life that I didn’t want to give any more attention than necessary, but that all changed after Amanda dragged me to Camp Friendship. As I mentioned a few posts ago, I made some friends who encouraged me to also attend Camp Sunrise. A few years later, I was old enough to be a counselor at both. Camp introduced me to a huge group of people who understood what I’d been through and showed me that being sick doesn’t need to be something to be ashamed of. They taught me that life is fragile and that no matter what your struggle, there’s probably someone who understands. Being sick also helped me find who my real friends are. I talked a lot about them in my great friends post – they were the ones who were willing to put in a little extra effort to keep in touch even when I wasn’t in school. As we made our way through the awkward middle school years, I knew I had true friends by my side and I still have them now. I can thank my treatment and camp for my positive attitude. I could cry all day about my situation (and some days I did), but what would that do? I’d be miserable all the time. If I try to find a few positives, I’m much happier. Of course, there’s a balance to stay realistic but finding the positives during treatment, whether that was a nice sunset view from my window or discovering a food I could actually taste, became more of a habit and now I find positives in everyday life situations. I definitely complained a lot more about silly things before my first treatment. In addition to finding positives, I am much more appreciative of my family, my life, and my body. My family supported me every step of the way and never left me alone even though technically I was an adult. Some parents left their toddlers in the hospital alone. Even if I was having a rough day, I was still alive which is a privilege denied to many patients, including some of my friends. Life isn’t something to be taken for granted. My body handled a lot of poison, infections and other stress and even though there are things about my body I might change if I could, I can’t hate it because of all it’s done for me. Cancer opened up a lot of opportunities I wouldn’t have had if I wasn’t sick. I don’t think I’d be going into scientific/medical writing if I had never been sick. I can’t imagine my life without all the friends I’ve made and lessons I’ve learned through this journey. I think it’s shaped me into a better version of myself, and that is why I can say cancer is the worst best thing that ever happened to me. When I asked for suggestions for letters, my friend Vaughn mentioned that he would be more interesting to write about than vegetables or whatever other V words I could think of. I quickly agreed because I didn’t have any other ideas and Vaughn is a cool guy, but it took a while before I had any idea what to write for this post.
Have you ever reflected back on your life and realized you were in the right place at the right time? When I first got to Drexel, I was pretty miserable. I had gone to school with the same people since Kindergarten and I suddenly found myself in a place where I knew nobody and I was terrified and alone. I had met a few people at orientation but not anyone I really saw myself staying friends with so I spent most of my time decorating my room and getting to know my roommate better (we definitely picked well – years later, she is still one of my best friends at Drexel). Anyway, during my first week at Drexel, I noticed the door to the next room over was open so even though I’m not the most outgoing person, I forced myself to walk in and introduce myself to the two girls who lived there, Sara and Sophia. Even at the end of the year, there were some girls on my hall I had never talked to but I’m so glad I was next to these two. One of my first times in their room, I found myself sitting on the floor with them eating macaroni straight out of the pot and I knew they’d be keepers – friends who like food and are willing to share are always good to have around. I’m not sure exactly when, but Sara’s friend Vaughn started hanging out with us a lot as well. Throughout the year, we had many great conversations over lots of delicious food. Macaroni (despite Vaughn’s #glutenproblems), fried chicken, pancakes for dinner, brownies (and batter) at 2am were just some of my favorites. Vaughn did (creepily accurate) tarot card readings for us and taught me the proper way to take a selfie and the four of us could talk for hours about anything. I don’t know what I would’ve done if I didn’t have such close friends in my building, but I know freshman year would’ve been a lot harder. It was so easy to stop in for just a few minutes for a quick chat or a much-needed hug. We didn’t need to go outside in the rain or cold to get to each other and pajamas were totally acceptable. We knew someone always had food if we didn’t have a chance to go shopping, and we shared our dining dollars if someone ran out. If I hadn’t walked in and introduced myself, I would’ve missed out on some great friendships and endless advice on life, love, fashion, selfies and so much more. These friendships are the ones I think about when I’m nervous about going out of my comfort zone- who knows what I’ll miss if I don’t? What introductions have really paid off for you? I’ve attended or volunteered at three cancer-related camps over the last eight years. It all started when my friend Amanda encouraged me to attend Camp Friendship with her, where I made some friends who encouraged me to also attend Camp Sunrise. As I became staff at Camp Sunrise, I was encouraged to also volunteer at SunSibs. All of these camps are great because they allow patients and/or their siblings to participate in normal camp experiences and get away from the stress of their everyday lives at no cost to the families. The medical staff can give chemo, blood products, etc so kids can attend even when they’re on treatment. Campers come back year after year, and offer encouragement and hope to the newer patients.
Camp Friendship is for patients and their siblings and is sponsored by the Carol Jean Cancer Foundation. Some of my closest friends there were siblings, which gave me the opportunity to see the other side of things and made me much more appreciative of everything my siblings put up with that I hadn’t really noticed. CJCF is a great group - even when campers who aren’t capable of being counselors age out of the program, the camp finds ways to bring them back every summer in other roles. After CJCF’s lease was up on our campsite, we had camp at other sites for a week each summer until last year when they tried something different: a family weekend at a fancy hotel right on the Chesapeake Bay. All of the past campers were a bit skeptical about having their parents at camp with them, but the weekend was a blast! I know for many people, it was our first time staying in a hotel that nice which was an experience itself. There was plenty of time that the campers were away from the parents for typical camp activities like crafts and pool time, but the whole group activities (scavenger hunts, relays, veggie race cars, etc) were hilarious too. Even the teenagers, many of whom were dragged to camp by parents who refused to leave them home alone, had a ton of fun and didn’t want to leave. I had a lot of fun as a counselor and it was great to get to know my campers’ families. When I was in the hospital, my parents didn’t usually talk to other parents much unless I introduced them to my friends’ parents. At camp, my parents met lots of other parents, which I think they enjoyed more than they expected. Camp Sunrise is a camp for children with cancer, and Johns Hopkins took it under their wing when the American Cancer Society stopped funding it a few years ago. I first attended in 2009, and became a counselor in training (CIT) a few years later. After my two years as a CIT, I joined the activity staff, running an activity called Newsletter. The kids can draw pictures, write stories or gossip, interview and poll each other and more and then see their work in print the next morning at breakfast. Once they’re finished with their newsletter submissions, they can work on theme ideas. At the end of the week, the activity staff looks at all the submissions and decides what will be best for the next year based on what would be the most fun and has the most activity potential. Where does Under the Sea come in? That was the first camp theme I helped pick at Sunrise! Great idea MW. The National Aquarium in Baltimore even let our camp have the entire place to ourselves one evening which fit the theme perfectly (though everyone was exhausted). Many of the counselors were campers at one point or are nurses at the local hospitals, so camp is really like a big family that understands what each person is going through. SunSibs is an extended weekend camp for siblings of patients. My sister went and made some good friends and the next year I joined the staff. I can’t wait to go back in a few weeks! As a mentioned a few posts ago, the siblings go through a lot and it’s nice to give them a special weekend to get away from it all. All of these camps have taught me so much (more about that in W’s post) and I look forward to staying involved for as long as possible. This year, I joined the planning committee for Sunrise and Sunsibs, which has been a great experience. As a camper, and even a staff member, you have no idea how much work goes into making the week possible. It’s rewarding to be able to provide a fun week to other campers after I enjoyed so many years of being a camper. If you’re interested in getting involved in any of these programs, as a camper or counselor, let me know and I can give you more information! You won’t regret it! I have quite a few traditions with my family or friends, but one of my favorites is actually a big part of my time with my family and my friends: castle cake (yet another idea for C, who knew that would be such a popular letter). What is a castle cake? Usually, we make two cake mixes (at least) but instead of making just rectangles or circles, we make them into a variety of shapes – maybe one rectangle, one circle, one square, some cupcakes, mini rectangles, and whatever other shapes we want. After they’re baked, we take a piece of plywood (2x3 feet or so) and cover it with tinfoil. We arrange the cake pieces to look like a castle, frost them like a normal cake, and decorate. We use ice cream cones for turrets, chocolate bars for drawbridges, Swedish fish and blue food coloring for the moat, and lots of other candy like gummy bear guards. My mom and her siblings have been making castle cakes since before I was born, and we still make them at big family gatherings like July 4th and Thanksgiving. I started making castle cakes for my birthday when I turned 6. At that point, my friends and I would arrange the cake pieces, my parents would frost it, and we would add the candy. We had to work outside since we couldn’t be trusted not to make a mess. Over the years, we were allowed inside (though we usually prefer outside) and we’ve started icing our own cakes and going beyond castles. If we have a big group, we’ll do a contest, giving each team the same shapes and candy and seeing what they’ve come up with. We’ve made boats, carnivals, and elaborate estates but the idea is still the same – make something out of cake and candy, and eat it when you’re finished (or eat some of the candy while you’re decorating…). What are your favorite traditions? Even though I mentioned them briefly in my family post, today’s post is dedicated to my siblings. I think siblings are some of the most overlooked and underappreciated people during cancer treatment. The new normal I mentioned last week doesn’t just apply to the patient but also the whole family.
My sister was my bone marrow donor, which was an absolutely amazing thing for a 10 year old to do. This is a very intense procedure, especially since I’m so much bigger than her, and she looked so green after I felt terrible for what I had put her through. I know my brother would’ve donated in a heartbeat if he had been a match, so we can’t forget about him either. Both of my siblings had to watch their older sister fight a terrible disease. They were both here when I went into septic shock and got rushed to the hospital in an ambulance. There were times I was too tired to do my chores or get myself a drink, and they’d help me out. They had no idea whether my treatments would be successful, and I didn’t either, but as the patient, I was wrapped up in the middle of it and it wasn’t too hard to keep fighting because I didn’t see any other choice. I think it’s harder to watch someone you love suffer and know there’s nothing you can do about it. One of my parents was almost always with me at the hospital, usually my mom, and my dad still had to go to work. This meant that my parents were hardly ever home, especially not at the same time. For a family that is used to having dinner together every night, this was a big adjustment for all of us. Normally both of my parents would go to as many of my siblings’ games as possible, but there were a few games that neither parent could attend. When I was in the hospital or apartment for extended periods of time, my siblings came to visit, even if there were other places they’d rather be. They spent Christmas and New Years in the hospital with me and we didn’t go on some of our normal family trips. My brother sometimes left his after school activities early to make sure he was home when my sister got off the bus. They dealt with this new normal without much complaint. Having a sick sibling isn’t easy, and when the patient gets everyone’s attention it can be even harder. One of my favorite things about making care packages at Cool Kids Campaign last summer was picking stuff out for the siblings and writing cards for them because I remember how surprised my siblings were, especially my brother, when they got anything in a care package. I can’t imagine my life without such great siblings. No matter what, they’ve kept me laughing. They would send me messages when I was away and find creative ways to get me to eat more when I needed calories but I wasn’t hungry. When my taste buds were messed up, we all ate hot peppers together because they wanted to see if I’d be able to taste them and I said I wasn’t going to try them by myself (though they may have regretted that decision). Thanks for everything<3 I rarely pass up the opportunity to go to an amusement park, especially one with good roller coasters. I always ask people what kind of rides they like before I plan a day at a park with them. I’m not a big fan of spinning rides but I love the thrill and speed of coasters. Some people don’t like old wooden ones, but I still ride them, especially the smoother ones like Thunder Lightning Racer at Hershey Park. I love racing coasters – they add even more excitement to a great ride, and the lines tend to move quickly – or really anything that’s a fun ride. The only ones I don’t like are the ones where you stand instead of sit. During treatment, amusement parks weren’t the most sanitary places to hang out, but I finally went to Kings Dominion a few weeks ago and rode my first roller coasters in years. Did you know roller coasters don’t run properly below 45 degrees? We didn’t either, until we arrived and it was only 39. We were a bit skeptical at first, but we watched them test one of the coasters and it rolled backwards when it didn’t have enough power for one of the hills. I also learned that my body forgot how to handle roller coasters. I didn’t feel sick, but I kept getting a little dizzy on the really fast ones or ones that had too many loops in a row. That’s never happened before, and I’m hoping as I regain more of my muscle back, they’ll pump my blood more effectively. I’ve been on a lot of great coasters but I think Volcano will always be my favorite. A few years ago, we saved it for last and decided to wait for the front row. If you’ve never ridden Volcano at night, I highly recommend it. It sends you flying up out of the volcano (there’s heat and everything) and you come out upside down so there’s nothing, not even the track, in your view. At night, you have a beautiful unobstructed view of the stars. Even though it only lasts a second, I remember it clearly years later. What are your favorite amusement parks? Any roller coaster recommendations? I love good quotes. I mentioned in an earlier post that I find lyrics for any situation, but I’ve also spent hours reading non-musical quotes about various topics – friendship, love, loss, family, cats, trees, skiing, really anything. If you’ve been reading my blog for longer than the A-Z challenge, you probably noticed posts and titles that reference quotes or lyrics. Sometimes I have trouble expressing my feelings but I usually find that someone already has, in much better words than I ever could. Especially on days where it seems like nobody understands what I’m thinking, it’s comforting to find quotes that do.
I found most of my favorite quotes during difficult times in my life so many of them are motivational or encourage positive thinking. I’m leaving song quotes/lyrics out of this post since I already wrote about music but I’ve decided to share a few of my favorite quotes. There are plenty more where these came from! “Every day may not be good but there is something good in every day.” – Alice Morse Earle “Give the gift of your absence to those who do not appreciate your presence.” – Unknown “Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you.” – Unknown “Don’t cry because it’s over, smile because it happened.” – Dr. Seuss “The happiest people don’t have the best of everything. They make the best of everything.” – Unknown “Cherish your yesterdays, dream your tomorrows, but most importantly live your todays.” – Unknown “Happiness is a journey, not a destination.” – Souza “Remember that the things around you are never as important as whose arms are around you.” - Unknown “Life is not measured by the number of breaths we take, but by the moments that take our breath away.” – Unknown “You are braver than you believe, stronger than you seem, and smarter than you think.” – A.A. Milne “Don’t wait for the perfect moment. Take the moment and make it perfect.” – Unknown “Cancer is so limited... It cannot cripple love. It cannot shatter hope. It cannot corrode faith. It cannot eat away peace. It cannot destroy confidence. It cannot kill friendship. It cannot shut out memories. It cannot silence courage. It cannot reduce eternal life. It cannot quench the Spirit.” – Unknown What are your favorite quotes? |
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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