The apple trees are blooming and there are flowers and bright green leaves on all the trees around my house right now. Last year when I went to school, I really missed the trees and the quiet but this past weekend when I stepped off the Megabus in Philadelphia it really hit me how much I missed it there. I know when I eventually settle down in a house, it will not be in a city because I love nature too much, but Philadelphia is a great place to be for college. I could walk everywhere I needed to go over the weekend and there was somewhere to go and people to see all weekend long. I’m so thankful that I was allowed to spend two nights there and catch up with so many people. On Friday, the bus was originally delayed 60-90 minutes, which they emailed us about before we left our house but unfortunately we didn’t see it. It ended up leaving White Marsh 3 hours late, but it was quite empty so I got my own seat and the traffic wasn’t bad for a Friday night. I wore my mask the whole time and an extra pair of pants and a jacket that I could take off as soon as I got off the bus. My boyfriend met me at the bus stop and I warned him not to hug me until I took off my bus clothes. They went in a bag until my ride back on Sunday. A woman and her son were sitting in front of me on the way up to Philly and she kept looking at me between the seats. A little while into the ride, she took her son and her daughter who was sitting across the aisle and moved to the upper level of the bus. I have no idea if she thought I was contagious because of my mask, but unless her son suddenly wanted to see the upper level, I’m not sure why else they would have moved while the bus was in motion instead of when it was stopped in White Marsh (they got on farther south, probably DC). Anyway, I like to give people the benefit of the doubt, but the way she was looking at me makes me think she moved because of me. I’ve had people ask me why I wear my mask, and that doesn’t bother me at all, but I didn’t appreciate the idea that she was making assumptions. I didn’t let it bother me too much, but I was rather shocked and told the girl I sat next to on the way home that I’m not contagious, I just don’t have a very good immune system. She was very nice and even gave me some of her blanket when the bus got really cold. She showed me the wedding cakes she was deciding between and told me all about the different types of cake. She had her wedding dress hanging next to her, and was clearly excited for the wedding in a few weeks. I had accidentally put my headphones in my other bag so it was nice to have someone to talk to during the bus ride. I spent the entire weekend people-hopping and got to see everyone I really wanted to see who was on campus, which I’m calling a huge success! Because of Drexel’s co-op program, some of my friends are home or in other cities working right now but they’ll be back in September. I ate a lot of food – brunch at Sabrina’s both days (if you ever come visit me at school, we will go!), breakfast for dinner, the cheesiest quesadilla I’ve had in years, ice cream, cake and more. Thanks to everyone I saw for keeping my food and germ limitations in mind while still helping me get within a pound of my weight goal! I had my boyfriend take me on a tour of campus as soon as I got there because so much has changed! There’s a block-long section that looks completely different than when I left last June and a building that was under construction all of last year is now complete. It probably sounds kind of silly, but I haven’t felt so normal in a while. It was just like I was walking around campus with my boyfriend and he was nice enough to be the one to touch all the doors because ew, germs. The weather was great for being outside (though I stayed in the shade) and I got to go to my friend’s birthday party and catch up with all my friends from the newspaper. She’s the one who got me interested in The Triangle, so it was only appropriate that I was there to celebrate with her! On Tuesday, my cousin and uncle came down from Pennsylvania and we went to DC to see Pop, my grandfather, who had flown in from Florida on an Honor Flight. Groups of veterans from around the world get to go to DC for the day and tour all of the monuments and memorials. We got there early, hoping to eat lunch before the group got there, but we didn’t pass any food on our way to the World War II memorial where we were meeting him. Buses of veterans from Texas and Iowa were there while we were waiting. After about an hour, we were all starving and my cousin and I ventured out to find something. Even though I probably shouldn’t be eating from food trucks quite yet, that was all we could find. By the time we got back, the buses of Florida veterans were there. More than half of the group was in wheelchairs, which were all stored in the cargo compartment of the bus so it took a while to gather for a group shot but they managed! I wasn't feeling great because of the sun and maybe my lunch so I didn’t get to talk to many of them but the conversations I heard were intriguing. I thought we were only going to be in DC for 1-2 hours and eat lunch inside but after the WWII memorial we went to two other memorials. Needless to say, I was quite sunburned by the time we got home. Even our aloe plants couldn’t help much, and when I walked into Hopkins the next day, my doctor said she was surprised I didn’t cancel my appointment. To make things worse, the hospital lights made me look even worse than I had at home. Nobody told me that a bad sunburn could cause a graft vs host flare-up, though I did know that I’m especially prone to skin cancer because of all the radiation before my transplant. Anyway, I will be especially careful with sunscreen from now on. I thought about it before DC, but really didn’t think we’d be there that long and now I’ve learned my lesson! Other than the sunburn lecture, things looked good. My counts are slowly but steadily increasing and I’ve had more energy. I’ve been having hot flashes recently which are really annoying and probably caused by low estrogen levels thanks to the radiation. Next time I’m at Hopkins they’re going to check my levels and see if anything needs to be done. I didn’t realize estrogen played such a big role in bone strength and other important things, I guess ‘you don’t know what you have til it’s gone’ applies to hormones too. The only other issue I’ve had is that my feet get tingly sometimes when I walk. It’s only happened a few times and doesn’t seem to be related to what shoes I’m wearing or how far I’ve walked. Some medicines can cause that but I haven’t taken them so I’m going to try taking some vitamins and seeing if they help! It’s nothing too bothersome, just weird. I’m more worried about the hot flashes. This is nurse’s appreciation week and Tuesday was 5 months post-transplant so I thought it was only appropriate to include a photo from transplant day with some of my favorite nurses. These three (plus Chrissy) took care of me more than anyone else and I couldn’t have asked for a better team! I know they often fought over who got to take care of me at the beginning of each shift but no matter who won, I was happy to have them. They let me sleep when I wanted to sleep and cheered me up when I wasn’t feeling great. They left me notes and pictures every morning (I still have every single one) and made the holiday season in the hospital way better than I ever imagined it could be. Even on the craziest days on the 11th floor, they were there when I needed them and kept me busy, even if that meant I was leaping between patches of tan tiles and worrying the other nurses or cleaning up their confetti on just after midnight on New Year’s Day. Thanks to my team and the other nurses who took care of me for making my stay as enjoyable as possible, and thanks to the rest of the nurses or nurses-to-be for doing the same for so many other patients. We really appreciate it! That’s about it for now! May is a pretty busy month but I’ll be doing my best to keep posting. I’m really looking forward to my road trip north, opening the pool (even though it means lots of sunscreen), camp, and continuing my internship at Cool Kids. We recently got the first issue of the Cool Kids Connection that I contributed to. The Connection is a newspaper that goes to over 100 hospitals around the country, and I’ll be contributing to the next few issues as well. It’s fun to be involved in a newspaper again, and distributing it to all the hospitals reminded me of distribution day in high school. It just feels right (hi journalism friends). Anyway, my high school friends are finishing up classes and will be coming home soon if they aren’t here already. I can’t wait to see them all more regularly! Good luck with finals to my friends finishing up classes and happy summer to those who are already home!
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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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