A few years after we moved to Maryland, my mom started working at the preschool my brother attended. Even though the school closed a few years ago, the staff still gets together a few times a year. Some of these people are more like extended family than my mom’s old co-workers. They visited me in the hospital and even took me to some of my appointments. I doubt most people are this close to the staff of a school they never went to and their families, but I wouldn’t change a thing!
My mom was still working at the preschool during my first treatment. Instead of leaving a sick ten year old hold alone, she often took me with her. I would usually sleep or do my homework in another room since germy preschoolers weren’t the best people to hang around with a compromised immune system. I didn’t like wearing my mask, but if I wanted to be in the classroom I usually had to. I remember the first day I wore my mask in, some of the kids asked why I was wearing it. I told them I needed it so I didn’t get sick, and I don’t remember getting many more questions after that. Unlike some adults that stare, the kids didn’t want the details, they were just genuinely curious and had probably never seen a mask like that before. After I explained, all that mattered was that I would help them color or play their game, not that I was sick or different. When I was living in Baltimore after my transplant, I remember passing a little girl and her dad on the sidewalk. She was asking him why I was wearing a mask, and he knew I heard her and apologized. I told him it was okay and I gave her the same explanation I gave the other preschoolers years ago. They’re young and curious, and I’d rather give them a simple explanation than leave their parents to make up a story that may or may not be anywhere close to the truth. Preschool is a great age before life gets more complicated. What lessons have you learned from preschoolers?
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I’ve been in a little over my head the past few weeks. This wasn’t one of my original ideas for O but it seemed fitting for this week. For some reason, I thought it was a good idea to go from a fairly easy 15 credit course load during winter term to a full time job, a four credit online economics course, and a blog challenge. This transition has been exhausting. I know a lot of people who have way more going on than that, so I’m definitely not complaining, but it has been a bit overwhelming both mentally and physically.
My baby immune system catches just about everything, so in addition to still regaining strength after my septic shock incident, I caught a stomach virus at work. I couldn’t eat a real meal for a week so my body has been exhausted. By the time I got off work, I barely had any energy for my homework or blog posts which is why I was a few letters behind. I managed to start most of them but couldn’t get through to the editing and posting. Many people write very short challenge posts – 100 to 300 words – and they are great, but that’s not how I work. I’ve been writing shorter than usual posts, but they are by no means short. Most are still around 500 words, which takes a good bit of time to write and edit, especially for some of the more sensitive topics or the ones where I really don’t know what to say. However, once I challenge myself, I rarely back down so I will write all 26 of these posts even if they’re a few days late! Even though sometimes taking on a lot at once, especially more than my body is physically used to, can be overwhelming, it builds my strength surprisingly fast. I wasn’t physically ready for all the walking when I went back to Drexel in January, but I got stronger much faster than I would have at home! Some days, I don’t handle stress well, but other days it keeps me focused. I’d much rather have a lot to do to keep my mind active than sit around bored. When I was in treatment, people were always commenting on how jealous they were of my free time, but I’m a productive person and having too much free time brings out my depression which is never good. I have a lot of respect for the people who juggle work with more classes, second jobs, and families to take care of. I’m hoping that ability just comes with time, because I’ve never seen a “Life” class offered at Drexel. Or a class about how to deal with taxes, insurance, investing or other adult things that have been popping up recently. Am I the only one who thinks life skills like those would be more valuable in overwhelming adult situations than a list of memorized equations or dates? Normal is a funny word in the life of a cancer patient. After diagnosis, my family found a “new normal.” I guess we are always finding new normal in life, but we don’t notice it until a big adjustment in a short period of time and I know I had never heard the phrase “new normal” before the oncology floor. There, it’s incredibly common among the patients, families and medical staff.
The new normal for a cancer patient isn’t fun. Nausea, altered taste buds, exhaustion, hours spent in clinic and detailed conversations about poop should not be part of anyone’s daily routine. Neither should signing forms to poison my body or get huge needles stuck in my hips. How did I cope with the new normal? I brought as much of the old normal with me, almost like a security blanket. I took classes online to keep me busy. While my friends dreaded the first day of classes, I was on blackboard before 9am to see what I could do. Some people are impressed by how well I kept up with school during treatment, but I didn’t see it as work as much as a hint of normal. I kept in touch with my friends and tried to talk about normal college things. I did my best to keep as many of my plans as possible, even though some had to be adjusted slightly. I didn’t mind losing my hair as much when I was 19 as I had when I was 10. I knew my friends would still love me, and after years of going to camp, I knew it was possible to rock the bald head. Even so, I rarely went around bald, primarily because after having super thick hair all my life my head was freezing without it. I quickly embraced the short showers and lack of shaving. However, when I lost all of my hair right before I was supposed to be a bridesmaid in my cousin’s wedding, I knew I wanted a wig. I know I could have been in the wedding with no hair, but it was nice to have a normal day, with nobody staring or asking me questions when they should have been focused on my cousin and her husband anyway. I was able to get my hair done with the rest of the bridesmaids and the best part? At the end of the night, I took off my wig without messing up the style and was able to wear it to brunch the next morning! Other than the wedding, I only wore my wig for a fundraising gala and some job interviews (let’s focus on my skills not my hair) but those were events where I desperately wanted normalcy. No, hair wasn’t necessary, but it was a part of normal. Plus, I got to experiment with being a redhead without dying my hair! (I loved it, in case you’re wondering). My parents worked hard to maintain as much of our old normal as possible for my siblings and themselves. Both of my siblings play multiple sports and are involved in other extracurriculars, but they rarely had to give up these activities which was a relief for me. I tried to use some of my extra time home to go to their games and activities. It was hard enough for me to know my illness was affecting my life, but it was also incredibly difficult knowing how much my illness was affecting everyone else’s normal as well. Even though I obviously didn’t choose to be sick, I hate being an inconvenience. Once you find a new normal, I don’t think there’s any way to go back. Sure, most things can return to the way they were but the new memories won’t go away. I don’t think I will ever not worry about relapse somewhere in the back of my head, and I know I won’t forget all of the lessons I learned during treatment. When did you need to find a new normal in your life? For today’s post, my friend Helen suggested marriage or manatees. I know nothing about manatees so I’ll stick with marriage. Thanks for such a great topic!
I know that I want to get married and start a family, but that’s about all I know right now. I’m not one of those people who has the whole event planned on pinterest and I doubt I’ve even met the person I’ll marry. We’ll see! When it comes to marriage, I don’t know much, but I do know that I have some amazing role models: my parents. When I look at them, I see two people in love who can always make each other laugh (but still have intelligent conversations), support each other’s wants and dreams, and together tackle anything life throws at them. It is this strength and support that I know I will look for in my future husband. Next week is infertility awareness week and this post seems like an appropriate time to talk about these issues because I know they’ll be a part of my marriage. Those of you who have been following my blog since the beginning might remember when I got the heartbreaking news that my egg retrieval efforts did not work (Shots, Shots, Shots). The radiation I needed before my transplant was likely to zap any eggs I had left, so they were trying to save some for me. Even though the doctors did everything they could to protect my reproductive system from the chemo, they think I might’ve had damage from my earlier treatments. Needless to say, this news was devastating, but I’m glad I found out now instead of after trying and failing and getting frustrated once I’m married. Even though I know it’ll be a weird issue to bring up in relationships now (because who wants to think about these things), I know that it’ll help me find someone who is willing to work through the options with me and fight for our future family. I’ve heard that this struggle can make the success sweeter, and I’ve watched other people in similar situations have beautiful families. I also remind myself that my treatments took one option away from me, but they kept me alive so I can explore my other options and who knows what the future will bring. Speaking of exploring, I’ll get back to the marriage topic. I see myself with someone adventurous and open to exploring new places, new experiences, and new ideas. I know we won’t agree on everything (and I wouldn’t want to) but I love to talk to open-minded people who can make me think. I hope all my readers, if you want to get married, can find someone who will support you in sickness or in health and on adventures big and small. I don’t care if you’re gay or straight or fertile or infertile – I just hope you’re happy. Writing a post about traveling under the letter L might be a bit of a stretch, but I already had too many good ideas for T and not enough for L. I love to travel, and I’m lucky to have a family that travels pretty frequently. I’ve never been outside of the country, but I’ve been to at least half of the states. I’m hoping to get to all 50 states in my lifetime, and at least one National Park in each state! I grew up in a family that rarely went to the beach (and if we did, we never sat there all day), partially because no matter how hard we try that would result in awful sunburn for most of us. Instead, we spent a lot of time hiking and we rarely went on the same trip twice unless we were visiting family. I love to see new places (and try the new foods there) so there are many great trips I’d love to talk about – North Carolina, Vegas and Arizona, and even some trips I hardly remember like Crater Lake in Oregon – but for the sake of a blog post I picked three. A lot of my favorite trips have been road trips. One surprisingly memorable trip was a Labor Day weekend during high school. My dad made us whitewater rafting reservations for Monday, but there was no set itinerary for the rest of the weekend. We drove west for a few hours and stopped whenever we came across something we wanted to do. We ended up visiting some very unique places that we probably never would have come across if we had planned our trip. That trip taught me that sometimes things can be more fun without a plan. My favorite road trip came a few years later. After high school graduation, most people from my high school go to the beach. My parents offered me a road trip I’d been dreaming of since middle school instead, and I quickly took them up on it. I could go to the beach with my friends anytime, but a road trip to CMAFest in Nashville? That was too good to pass up. My dad and I went on an amazing trip, stopping to go rafting on the New River, explore Mammoth Caverns, and hike in various parks on our way to and from Nashville. Our days in Nashville were non-stop country music (10am til after midnight) and I absolutely cannot wait to go back. Since the only trips we regularly repeat are to visit family, I’m lucky I have a lot of family in Maine since that’s one of my favorite states to visit. We get to see family and visit some amazing places all in one trip! We usually drive up which is long but allows us the flexibility to stop anywhere on our way – the Cabot and Ben & Jerrys factories are some memorable stops. Anyway, my family lives pretty close to Acadia National Park so we’ve done quite a few hikes there. One of my favorite places doesn’t require any hiking though, it’s just a big rock scramble. Schoodic Point is rarely crowded but always beautiful. Even on a foggy day it’s interesting. When we’re in Maine, I also love to visit Eagle Island on the Penobscot Bay. My aunt and uncle own a house out there and it’s a great place to relax and disconnect from the world. There’s so much to explore and it's so easy to forget any worries for a while! In 2013, about two months before my relapse was diagnosed, my family went to Hawaii for my parents’ anniversary. That’s right, our parents are so great that they took us on their anniversary trip. Over two weeks we visited Kauai, Oahu, and Hawaii (the big island). Kauai was easily my favorite since it was the least developed and most beautiful of the three. I knew I was anemic, but I was taking iron pills so I was slowly getting more energy. While we were on Kauai, we hiked the Kalalau Trail. We hiked two miles in to a beach, and then I was planning to relax there with my mom while my dad and siblings hiked an additional 2 miles up to a huge waterfall. I decided I was curious about the waterfall, so we headed after them. We could see it long before we got to it, but once I could see it I figured we were getting close so I kept going even though my mom insisted we could turn around at any point. It doesn’t look that big in the picture, but we were still really far away when I took that. Up closer, it was impossible to get even half of the waterfall in one shot. I swam in the freezing cold waterfall, which felt good for a few seconds but it took me forever to get warm again once I got out. By the time we hiked the four miles back to the car, I felt so sick and tired. I could barely eat dinner and I had a terrible headache but I’m glad I did it. During treatment, if I ever thought I couldn’t do something, I had that hike to think about. First of all, it was gorgeous, but really, I did it, I hiked 8 miles to that waterfall, leukemia and all. Sure, it wasn’t diagnosed yet but I was already very sick. (Just now I realized leukemia is an L word, but I didn’t need a whole post for that). I’ve always thought Alaska was interesting but now that I’ve been to Hawaii, I really want to go to the other faraway state. There’s a show on HGTV where people are looking for houses in Alaska and it looks gorgeous! What’s next on your travel list? I grew up with two cats, brothers who are about 16 in human years. Even though they’re related, their looks and personalities are quite different. Tiger looks like almost every other cat named Tiger, and Jumper is dark gray with white paws. He was really good at jumping up and climbing the fence around our pool even when he was a little kitten, which impressed my five year old self. This post isn’t particularly elaborate and they’ll never read it but I wanted to make sure my cats got some blog love since they’ve been a part of my life for almost as long as I can remember. They always preferred to be outside, though as they’ve gotten older, they like to spend more time inside. Up until recently they refused to use a litter box. Something about the cold winter must have convinced them that going outside wasn’t really worth it, but now that it’s getting warmer, they have been waking me up in the morning begging to go out. I don’t have any one specific favorite memory with our cats, but they’re part of many memories. I remember one weekend when my grandparents brought their dog and the cats were so terrified they climbed up a tree and spent a day or two there. When we were younger, my brother and I would make them a bed in our wagon or stroller and give them rides around the driveway. They would sit on the hoods of our cars when we got home to enjoy the warmth from the engine. They’d bring the rodents, birds, and snakes they caught and leave them on the porch for us. I know cats can only live so long, and ours are both starting to show their age which I hate to think about. They don’t catch as many birds now, but they still watch them on the birdfeeder. No matter how long our cats stick around, I’ll always remember their ability to cheer me up on a bad day and keep my feet warm during cold winter nights. Even if my family was away, I could always count on at least one of them running to the driveway to welcome me home as soon as I pulled in. I think anyone with a pet understands how much they add to a family, and I know I’ll have my own pets in the future! Did you have pets growing up? …It just feels right. This post is dedicated to all of the wonderful people in my high school journalism classes, especially Derry, my assistant editor-in-chief, and Leila, our amazing teacher. I don’t think there are words to adequately describe our class, but I’m writing a post anyway. I took Journalism 1 as a freshman in high school, which met at the same time and place as Journalism 2-4. There weren’t many freshmen, but we all became friends and continued to take the class year after year until we were in Journalism 4 as seniors. The journalism classes were responsible for writing the articles for our school paper, and the higher level classes took on more responsibility, becoming section editors in charge of their content and layout. By sophomore year, I realized that I definitely did not want to write for a newspaper as a future career. I liked to write, but news was just not that interesting to me – I’d rather write about science, which I’m glad I figured out before I got to college. I started writing fewer articles and focusing more on learning Adobe InDesign, which came in handy when I took over as Editor-in-Chief during my junior year. Journalism was the place in high school where I felt most at home – I wasn’t consistently on sports teams or in theater or other major activities. We had a great group of people in journalism that returned year after year. Even when the lessons about the proper format for a news article start to fade in my head, I’ll always remember the people and the good times we had. I’m not sure I’ll ever forget the fonts and sizes I drilled into everyone’s heads or our dress code picture and the mysterious Twitter shark. We got our work done, and printed a pretty great paper compared to other schools in the county (except Centennial, there was no beating their paper. Ever. Ugh.) but we still had a good time. We ordered class shirts with our names and positions on the back. We threw our teacher a surprise birthday party, complete with food and Hello Kitty decorations. We went on field trips to the Newseum (if you haven’t been, I highly recommend it). We made time for white elephant gift exchanges and holiday parties before each winter break, celebrated the seniors’ last class every year, and had superlatives complete with useless prizes. I’ve lost track of most of the superlatives I won, but I remember being chosen as most likely to work on a newspaper in the future (or something along those lines). I think that was senior year, so I already knew I didn’t like writing news and I hadn’t decided if I’d join my college newspaper. I wasn’t sure any other group could compare to the one I’d spent my four years of high school with. Just in case though, I picked up a copy of the campus newspaper whenever I went on a college tour, and that may have helped me rule out some schools… Anyway, I didn’t immediately join The Triangle during my freshman year at Drexel, but the editor-in-chief came to speak to one of my classes and I realized how much I missed InDesign and the newspaper atmosphere. I contacted her later that week and from then on, I was in The Triangle offices at least two nights a week working on the news layout. Some of the other staff members became some of my closest friends on campus. When I was diagnosed right before I returned for my sophomore year at Drexel, The Triangle was what I knew I’d miss the most. I could take my classes online, but working on the newspaper from another state turned out to be impossible which was devastating. Even though I don’t plan to work on a newspaper as my career, I can’t imagine my high school and college experiences without The Shield and The Triangle. I wouldn’t know how much fun you can have while still producing a great product and I would’ve missed out on a lot of late nights, Wawa runs, and most importantly great memories with great people. Thanks to everyone who made those memories so special! I love you guys! I don’t think many people go into college knowing exactly what they want to do at what company. I certainly didn’t. I still don’t really know, but I have a much better idea thanks to three very different internships during college.
After freshman year, I had an internship at the Appalachian Trail Conservancy in their marketing department working on planning events for a membership drive. I worked with some great people, and we had monthly cake days to celebrate birthdays which was pretty cool. Since I was there for the summer months, there were a lot of thru-hikers passing through Harpers Ferry. I talked to some of them, and their stories were really interesting. The hour-long commute was better than most hour-long commutes because it was against traffic, facing away from the sun, and through gorgeous western Maryland. However, it made for long days and I know commute is something I’ll definitely consider when choosing my future houses/jobs. My internship was cut short by a month when my day off for a dentist and doctor appointment turned into a cancer diagnosis. This meant I never got to attend any of the events I had been planning which was incredibly disappointed. Last year, I had an internship at Cool Kids Campaign for my first co-op. I wrote about it pretty frequently in my posts last summer, but for new readers, Cool Kids Campaign is a Maryland non-profit that supports kids and their families during (and after) cancer treatment. Although they’re based in Maryland, some of their programs are nationwide. I got involved in a teen survivor club sponsored by Cool Kids during high school, so I was already familiar with their programs when I relapsed in 2013. They were extremely supportive during my treatment, and I found it really rewarding to join them as an intern to give back to other kids and families in treatment. The summer was full of events, including an annual 5K (June 14th this year for my runner friends) and the American Girl Fashion Show. This show is one of my favorite events, since I was a huge AG fan as a child. Over 100 girls are chosen to be models in the show, and they dress in outfits to match the doll’s historical clothes, pajamas, and other outfits while the emcees tell the doll’s story and explain the outfit’s features or significance. Each model fundraises for Cool Kids and it’s amazing to see how much money some of these elementary school girls raise for such a good cause. My sister will be participating for the third time, though this will be her last year since she’s outgrowing the clothes AG provides for the show. When I wasn’t busy working on stuff for events, I was writing or editing for the Cool Kids Connection, a newspaper that goes out to pediatric oncology units in hospitals around the country. It’s filled with patient submissions and helps connect families going through similar situations. Other days, I would make care packages for kids nationwide based on their interests or plan outings for the teen survivors club. Having an internship at a small nonprofit made it clear to me that I want a job that makes a difference in people’s lives. I don’t think I’d be happy working for a big corporation (though I haven’t tried it so I guess I don’t really know). It was really interesting to be on the other side of an organization that helped me. When I relapsed again halfway through my internship, I was lucky enough to have a flexible schedule which allowed me to balance appointments and my internship. I could also complete some projects from home or the hospital, which was great for keeping my mind off things when I felt too sick to drive in. It was a little bit of normalcy in the midst of a lot of chaos. I don’t have too much to say about my current internship as a technical writer yet because I’ve only been there two weeks. My department has been very welcoming and friendly which has been great. I’ve gotten to work with some pretty cool programs to generate documents based on the engineers’ models. If you’ve never heard of model-based systems engineering, the main take-away is that when someone makes a change to the model, they make it in one place. They can then generate all the appropriate documents from the templates I’m creating and those documents will include the change in every necessary place. This is just a few clicks, instead of going through every document and making the change by hand repeatedly. I enjoy the projects I’m working on and the documentation is kind of a puzzle, which I really like even though it’s been a little slow to start while I figure out the programs. I love to learn, so being involved with a variety of complicated engineering projects is interesting for me. I’ve learned that I like a challenge and I like to help people. I like a friendly and somewhat casual office environment. I don’t know what this will mean for me down the road, but I’m glad I’m learning now. What did you figure out (or wish you figured out) from your first jobs or internships? Home is one of those things I didn’t really think about until I went to college. After a few months at Drexel, I remember talking to some of my friends about which place we referred to as home – our dorm or our house. Looking back, I don’t know why we were trying to pick one or the other. I’ve realized home is not so much the location but rather the people and memories you surround yourself with, and it’s okay to have more than one.
My current house with my family has been home for the longest, but I know I’ve been influenced by other homes as well. We moved from Massachusetts when I was 5, but I remember more than I expected. It wasn’t until late elementary school that I realized every time I read a book that was set in a house that wasn’t described in much detail, I pictured our house in Massachusetts. I always pictured my favorite character or the one I could relate to the most having my bedroom. I still do this, though I’m more conscious of it now. When I go over to some of my friends’ houses, it’s like being home. Their families are my other families. If they know I’m coming, I know it’s pretty much expected that I’ll let myself in instead of knocking and that I know where the glasses and drinks are just like I do in my own house. By the second half of freshman year, it was easy to consider my dorm at school a second home. I was surrounded by great friends, including my roommate and other people on my floor. This year, when I was back at Drexel for only three months and living with a stranger who was hardly there, it was harder to think of it as home. She was nice, but there was not the kind of connection that I associate with places I call home. Right now, I call Maryland home. I live in an area with a balance of trees/nature and convenience. We have space and privacy, but it doesn’t take too long to get to a gas station or grocery store. I went to great public schools where I met many of the amazing friends I mentioned in my last post and I learned enough that I actually felt prepared for college, unlike quite a few of my peers from other school systems. DC, Philadelphia, Baltimore and Harpers Ferry can all be day trips. Same with Hershey Park or Kings Dominion and the beach or mountains. I love being in the city for college since I don’t have a car but once I settle down, I picture myself returning to somewhere with more green space and less traffic. I don’t know where that will be, but it will be home as long as I’m with people I love. How do you define home? Do you have more than one? Most people are surprised when they hear that I met most of my best friends in elementary school. We decided to be friends for random reasons that made sense in elementary school, including liking each other’s names or clothes, but somehow those friendships have lasted. We don’t necessarily see each other very often now that we’re all in college, but I know they’ll always be there. At this point, we’ve been through so much together that it would be silly to let something stupid break us apart.
During my first treatment, I learned pretty quickly that not all of my friends would stick around. I wasn’t in school, so it was a lot more effort to keep up my friendships, and that effort was required from both sides. When I went back to school, I reconnected with some of my old friends, but I’m still closest with the ones who were there through it all. The same thing happened when I was away from Drexel for 18 months. I kept in touch with a few people but others disappeared, and that’s okay. My friends, along with my family, have always been my biggest support system. I’m lucky to have friends from so many different parts of my life – childhood, camp, the hospital, Drexel, and family – which is great because I get a variety of perspectives. I know it isn’t easy to watch someone go through treatment and feel like there’s nothing you can do, but my friends did what they could, which was way more than I ever imagined. During treatment, they never failed to make me smile: they texted, visited, called, and made me a scrapbook and my countdown chain. When my weight was down, they brought me food and insisted I ate the entire last cookie even though I know they wanted some too. They brought our annual Christmas party to me when I was stuck in the hospital and joined the bone marrow registry in my honor. They wrote me letters and sent cards. They considered my immune restrictions when making plans. They designed an awesome t-shirt to show their support. They planned surprises with my family and brought me gingerbread houses even when I missed an annual gingerbread house party. They came to visit me from Drexel since I couldn’t go there. They let me have rest period at camp, even though that luxury is denied to most activity staff. Of course, I’m not referring to any one friend here – my life is better because of many great friends. My friends have been here for me every step of the way, through the awkward teenage years, breakups, and all the other ups and downs in life. I know I can always count on them, and I hope they know they can always count on me. Friendship doesn’t require grand gestures, but take the time today to let your friends know you’re thinking of them. |
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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