I’ve always loved Dove chocolate because of the fun messages on the wrappers. If you’ve ever eaten multiple chocolates from the same bag, you’ve probably noticed that the messages usually repeat. A few weeks ago, I opened one that said “Because you can.” I tried to flatten it out and save it like I do with all of my favorites, but it ripped right through the message. I spent the next few weeks hoping to find another one in the bag. I got down to two chocolates and it seemed like it wasn’t going to happen but on the last one, there it was again! Anyway, I knew instantly that would be the title of my next blog post, and I’m finally getting around to writing it. It’s going to be a long one because, once again, I fell into the trap of waiting for answers to my questions before updating everyone. I’ll learn my lesson one of these days. I posted my last update as soon as I had my six-month post-transplant bone marrow test results, which were clear. I was obviously thrilled with the good news, but within 24 hours of my good news post, my doctor called me. “We’re really happy with your test results, but…” He explained that it’s great that I’m still in remission but they want to make sure I stay there. They had a few options in mind and wanted to set up a time to discuss them. Although I understood what he was saying, I was so sad and frustrated that I cried as soon as I hung up. Can’t I just enjoy some good news for a few days without a “but” after it?! We set up a meeting for the following Tuesday, but we switched to a phone call instead due to the snow storm. All winter, I said that if we were going to get a snow storm, it needed to be after I got off my crutches. I got my wish, but we didn’t get nearly as much snow as predicted and it wasn’t good for skiing. We did go sledding though! Anyway, the phone call was not particularly surprising. I still haven’t had much graft vs. host disease or any other signs of a big immune response since my transplant. Although it’s generally good not to have too much, part of the reasons transplants work is that the donor cells seek out any residual disease, which can cause side effects. My doctors are worried that, since I haven’t had those side effects, I’m at a higher risk for relapse. They recommended a donor lymphocyte infusion, where they would give me some lymphocytes from my brother in a very low dose. This would hopefully stir up an immune response to kill any residual disease with fewer side effects than the full dose they would use if I had disease. The plan was to set up the cell harvest during my brother’s spring break the following week and I’d get the infusion before I headed back to campus at the beginning of April. My doctors seemed a little bit offended when we actually laughed out loud when they told us they were going to be efficient about this plan, but sure enough, our laughter was justified. As my brother’s spring break began with no word of an appointment, I became increasingly frustrated. We finally found out that adult oncology needed to approve the procedure (for reasons unknown to me), and they refused to approve it. They said it was too risky given that I didn’t have any active disease, even though I was at high risk for a relapse. I was so upset. Back in the fall, my doctors told me a strong immune response with this transplant was my best hope for a cure. Although I hated the idea of additional treatment while I was in remission, I completely bought in to the necessity of a low-dose donor lymphocyte infusion on that snowy Tuesday morning. Now they were telling me never mind, we’re not going to do anything right now?! But you just convinced me I needed to do something! And now I had given up the possibility of any spring break plans because I was expecting that week to be full of appointments. As usual, I used my frustration to focus on finishing my six classes and ended up with another 4.0. I spent a lot of spring break working on camp stuff and I was interviewed for a video for the Hebda Foundation gala. The Hebda Foundation donates a lot of money to Hopkins and camp and I was thrilled to find out the gala raised over $50,000! As I got ready to come back to school, I noticed I was getting tension headaches whenever I went to the grocery store. I couldn’t figure out why until I went for a walk one day and realized the walking was the problem. After six weeks on crutches, my back wasn’t used to holding me up straight, so I started going for walks every day to prepare to go back to school. It got better quickly, though I was pretty miserable after my first day of classes until my friend Alyse saved the day with a back rub. I moved back to Drexel on April 2nd, just in time for the start of our spring quarter. Being back in the city was such a huge adjustment at first. I went to brunch on my first full day back and probably saw more people walking around Old City in half an hour than I’ve seen in months. My first week of classes was also really overwhelming because we only have a one-week add/drop period and I changed my classes around quite a bit. I also had to get approval to finish my degree in the fall but walk in June’s graduation ceremony. I got a nice lecture from the graduate studies office about how BS/MS is an accelerated program and extensions aren’t usually granted, had I considered getting my masters later, before I was given the chance to briefly explain my situation. It turned out okay, but those few minutes when I thought I wasn’t going to get my degrees after all my hard work to keep up were devastating. Although I had pretty much given up on graduating from the honors program due to all my time off, I was able to work a class into my schedule this term to make that possible. I’m taking some other cool classes, including one on infographics and one on occupational and environmental cancer. I’m also taking an editing class and have been working with two PhD candidates to edit their dissertations. Overall, the transition back was easier than I expected. It helped a lot that I had more close friends to come back to this time, so I was busy immediately. I’ve also been reading a lot, especially when I’m anxious or stressed. It helps me recharge and I’ve found I’m actually much more focused and productive if I take occasional breaks between assignments to read. I barely read at all last year, so I set a goal of 15 books in 2017. I’m already on my 14th, and they haven’t all been short – I managed to finish The Emperor of all Maladies in less than three weeks! If you have any recommendations, send them my way. After I was back at Drexel for a few weeks, I got a call from one of the nurses at Hopkins. She told me about a new trial that my doctors are recommending in place of the donor lymphocyte infusion. It’s called RESOLVE (Research of Expanded multi-antigen Specifically Oriented Lymphocytes for the treatment of VEry high risk hematopoietic malignancies) but it’s so new that I don’t think the results have been published in a journal yet. Also, the first few people who received the therapy had disease, but I qualify due to my very high-risk patients even though I’m in remission. The study is actually somewhat similar to the previous plan, except that when they harvest the lymphocytes from my brother, they’ll pick out specific ones that are more likely to attack the disease and less likely to attack me – ideally, the same anti-residual disease effect with fewer unwanted side effects. My two biggest concerns about this trial were how it affects my summer road trip plans and camp. Luckily, the timing of the harvest and the time they need to grow the cells work out pretty perfectly. I’m not sure if I’ll still be able to have my second knee surgery in August because the study team doesn’t want to mix the cells and the extra inflammation from surgery. If anyone is more curious about the science behind it, here’s the one article I found. A few Mondays ago, I went to PT after class and felt completely drained walking home. I had done some new exercises, but it was still very strange. I called in to a camp meeting later that night and when it ended (before 9), I was so ready for bed. Sometimes my body takes a while to cool down, but I realized I still felt very hot even though I’d been home for hours. I checked my temperature and realized I had a fever. At Hopkins, I’m supposed to call the fellow on call for any fever 100.4 or higher and since I still have my port, I’d go to the emergency room immediately. I know CHOP’s rules are more lenient, but I called them just to make sure. They don’t bring people in until they’ve had three fevers of 100.4 or greater in 24 hours (at least an hour apart), or one fever 101.3 or greater. I checked every hour, but my fever disappeared after two so I didn’t need to go in. The next day was very busy and luckily, I felt fine. On Wednesday, I went to PT again and a few hours later I felt awful again. This time, I got to three strikes and went to the ER. My friend Maddy came with me which was nice because I’ve never been to the ER alone. My fever was gone by the time I arrived (apparently I should have spaced out my checks more than an hour), but they still drew labs/cultures and gave me antibiotics before sending me home. I felt fine for the rest of the week until Sunday night, when I had a fever high enough to go in after one strike. Maddy came with me again, this time prepared with snacks and proudly able to recite my allergies, port needle size, and favorite dressing. Our friend Alyse also came to hang out, and the doctors were quite entertained by our conversations compared to the usual patients in a children’s hospital. My hemoglobin was low and that was my second time in the ER in a few days, so they decided to keep me overnight which wasn’t particularly surprising. I was very worried about the low hemoglobin because that was my biggest symptom when I relapsed in 2013. We went up to the oncology floor where we discovered my nurse was a Drexel grad and my friend’s roommate! I told Maddy I would be fine overnight but she sensed my lack of confidence (especially with the hemoglobin issue) and is the greatest human ever and spent the night with me. My parents have worked really hard to make sure I’ve never spent the night in the hospital alone and I really appreciated the support even though I’m an adult and could probably handle it. It’s always nice to have a voice of reason when I’m worried. I had an appointment in clinic later that week and was pleasantly surprised that my hemoglobin was almost back to normal. Since then, I’ve been feeling great and only had a few occasional fevers that never got to three strikes. On Friday night, I was making dinner and had a headache, which has been accompanying these fevers. Sure enough, I had a fever high enough to call immediately (though I will admit I finished making dinner first because I was starving). This time, I went to the ER by myself though two friends came by to visit while I was there. Like before, they did labs/cultures and antibiotics then sent me home. These fevers have been frustrating, especially because they were worst during midterms. I got behind on my projects, was nervous and overwhelmed, and I even cried while meeting with a professor (but he was extremely understanding). I have no idea what days I’ll get them, but they’re always around the same time in the evening and disappear in a few hours unmedicated. They remind me of a fever I kept getting after one of my CART treatments, but those cells should be long gone from my body. Everyone is guessing it’s a virus but of course anything out of the ordinary makes me worry it’s much worse. However, my counts have been pretty stable and I’ve had plenty of energy and appetite, so I’ve been trying my best to focus on the simple explanation of a virus. Even with all the medical uncertainty and an at times overwhelming 18-credit BS/MS course load, these last two months have been some of my most fun at Drexel, and that’s where the title of this post comes in. I’ve been so thankful to have the friends and the energy to pack so much into the past seven weeks. I’ve caught up with friends have haven’t seen in months or years. I’ve eaten lots of tacos and ice cream (thanks Insomnia) and had Sunday brunch almost every week. I taught my friend how to dye Easter eggs, and spent a few Tuesday nights in trivia contests with my friends at local bars. I got my first non-shave haircut in years. I participated in the NEDA walk and attended the regional conference for the Children’s Oncology Camping Association. I’ve gotten to know some of the professors I’ve only ever worked with remotely. I learned some great new board games and that I’m not very good at disc golf, but there’s hope. I’ve gone to physical therapy twice a week and gotten much stronger. I’ve called in to camp meetings and am really looking forward to Sibs next weekend and Sunrise in August, which my brother will hopefully be attending for the first time! I’m also really proud to say that I finally updated my blog site and published my Resources page thanks to lots of input from my friends, their families, and even people I’ve never met but “know” through online support groups. I’m so appreciative of everyone who played a part. I have an appointment at Hopkins on Friday morning where I will hopefully get more information about the RESOLVE trial plan. I’ll write another post when I know more but I didn’t want to put this off any longer. For now, I’m focusing on enjoying the last few weeks with my friends before they graduate. I’ll be walking in the ceremony (June 12th!) even though I will not officially finish until the fall after my road trip. Thank you all for making it to the end of this ridiculously long post and for your continued love, prayers and support. I would be nowhere without you!
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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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