As of tomorrow, my transplant was 6 months ago. Isn’t that crazy? Since I was never on any immunosuppression after my transplant, this marks the end of my food rules! Now I can have berries, frozen yogurt (hence the title of this post), drinks from dispensers, Chinese takeout, salad and food from buffets! I’m sure there’s other stuff that I’m forgetting but those are some of the big ones. Fewer rules makes it a lot easier to visit Drexel, which I’ll be doing again this upcoming weekend! Last time I wore extra clothes and a mask on the bus – this time my doctor said neither is really necessary, but I might wear my mask just to be safe if it’s crowded. Around 6 months, I also need to get all of the heart and lung function tests again. Last time there was a slight issue with my heart but they weren’t too concerned. Just in case, I have an appointment to see a cardiologist in a few weeks and the other tests are are scheduled for my next visit. I had my bone marrow and spinal tap on Tuesday afternoon which went well. I don’t have the results yet (hopefully still no evidence of patient) but I should by next week. The Versed didn’t knock me out for the entire day which was nice. I was functional by 4:30 (compared to some past experiences where I’d sleep through dinner) so we went out to dinner at a Hibachi grill in celebration of the end of the food rules. Once my bone marrow results come back, they can schedule the surgery to remove my port. My doctor wouldn’t schedule it before the bone marrow aspiration because she’s superstitious. Since I can swim/shower/really do anything with it, it’s not bothering me too much. I’m not looking forward to the surgery because it was really painful years ago coming out and it was painful going in last fall. However, my nurse mentioned that she’s seen people get line infections so bad that they’ve ended up in the PICU and died. Okay, my port can come out anytime now! My hair is getting really long and as it grows it looks more and more frosted. When it first started growing it looked really blonde but it’s gotten darker so the tips look really light. It’s not as dark as it was before though! When I was at Hopkins the other day, I was talking to one of my nurses with my back toward the nurses station, where the other nurses were arguing over whether it was me or not because 1. My hair was so long for only 6 months out and 2. They had only seen me with really dark hair. One of the receptionists even said to me “I have to get used to you with hair.” I usually wore the same hat to clinic and she always said “Hi Karen” when I signed in. Now it always takes her a second. I’ve been really busy since my last post doing lots of normal things! It’s been great! After my weekend in Philadelphia, I went to Massachusetts the next weekend for my cousin’s graduation. It was great to see everyone since we haven’t been up there in two years. We went to both the pinning ceremony and the graduation and by Saturday afternoon we could call Annabelle a nurse! Congratulations! The food at her graduation party was perfect for her degree – jello shots, pill cups, specimen collection containers, thermometer popsicles, and of course a cake with a normal heartbeat around the side in icing. Even the dogs were dressed for the occasion! While we were in Massachusetts, we also got to go to my other cousin’s soccer game and hang out on the playground. During the game, I noticed a coincidence I couldn’t ignore: my cousin is 5 years old and she was #24. That day happened to be 5 years since we lost my friend Amanda, also a soccer player whose favorite number, birthday, and jersey were always 24. Thanks Amanda for watching over me and my other transplant friends the past few months. Actually, today is one friend’s day 100, and another friend had hers earlier this week. It’s exciting for me to see people reaching these milestones and getting to go home – I remember how excited I was and of course I’m proud of them for kicking cancer’s butt! For Memorial Day weekend, I headed to North Bay for SunSibs, a weekend camp for kids whose siblings had or have cancer. I’ve gone to Camp Sunrise for years now but I’ve never gotten to be part of the siblings weekend, which Susie went to for the first time last year. All of the staff arrived Friday (yes, that was a miserable drive on a holiday weekend) for orientation and the campers arrived Saturday morning. I was on activity staff, running newsletter. Each day when the campers come to my activity, they have a chance to write anything they want and see it published the next day. Some kids conducted polls, going around asking their fellow campers about their favorite activities or crazy would you rather questions. Others wrote stories, drew pictures, or submitted gossip. At breakfast each morning, the campers would find the previous day’s submissions on their tables in The Sibs. I run the same activity at Camp Sunrise and there always seem to be extra copies so I only printed about 3 per table. For the first time, people came up to me asking if I had any extras! I printed more the next day. The weekend was a lot of fun, and the campsite has a gorgeous location on the bay so we had a campfire on the beach at sunset. Everyone got to participate in the adventure activities including the zipline and the huge swing, which was a new experience for many campers and counselors alike. I enjoyed meeting so many new people and seeing how different SunSibs is from Sunrise. My bunkmate was one of my nurses, which made my other nurses at Hopkins a little jealous. The busy weekend was a little much for me – even though I’d gotten enough sleep all weekend, I slept for almost three hours when I got home. Drexel runs on the quarter system and the spring quarter is just finishing up. I’ve completed all of my work for the one class I took this term except for the final exam, which is due next week. I won’t be taking another class during summer term because I’ll be busy with my internship and other summer activities. Since I still have more credits than I need even with the term off in the fall, there’s no reason to be stressed over the summer. I’ve been having a lot of fun at Cool Kids doing everything from designing flyers to working on social media campaigns to making care packages. There are fewer major events now than in April but there’s a running festival coming up at the end of June. If anyone is looking for a family-friendly 5k or a 1-mile fun run, check it out! Last week, Cool Kids got tickets to a prescreening of The Fault in Our Stars, so nearly 100 patients/families/friends went to that. The movie was great and followed the book really well! I’ll probably write more about that in another post but since the movie doesn’t come out to the general public until tomorrow, I’ll wait! If you haven’t read the book yet, I highly recommend it! Some cancer books are incredibly unrealistic but I could really relate to this one. Last weekend, I biked for almost seven miles with my family. By the end, my legs were really tired even though it was pretty flat but I guess that’s to be expected since I haven’t biked since last June. We were biking near the campground that we had been planning to stay in for Labor Day weekend until I ended up in the hospital. As it turns out, the campground is really nice but it’s close to a major train switching yard which is really loud. Maybe it’s better we realized that now. Our pool is finally a good temperature for swimming! We’ve been planting lots of flowers and getting ready for summer parties and days by the pool. If anyone wants some hosta or lily plants, let me know! We have multiple kinds of each. Also, we can’t eat the amount of rhubarb that our plants are producing, so if you want to make a rhubarb pie, don’t bother buying it at the grocery store. I think that’s about it for now! I’ve broken almost all of the food rules in the last two days: I’ve had salads, drinks from dispensers, blueberries, and a snocone! I’m sure I’ll continue to enjoy my food freedom. I’m looking forward to my weekend at Drexel and all the nice weather ahead. The rest of June also includes a crab feast and maybe a Relay for Life, plus lots of time with all of my friends who are home for the summer. It’s been so good to see so many people in the last month and I’m hoping to see many more over the next few weeks. To my Drexel friends in class right now: good luck with finals and co-op interviews! To everyone else: I hope you’re enjoying your summer!
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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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