February flew by, but I finally have update-worthy news and I’m sharing it in a timelier manner than usual! It’s almost finals week, and blogging is way more fun than most of my to-do list. February wasn’t too eventful medically. I had an orthopedic appointment a few weeks after the core decompression surgery on my knee, and my doctor was shocked that I hadn’t cheated and put weight on my right leg. I was surprised to learn that most teen/young adult patients are too impatient to wait six weeks and ignore the risk of fracturing their bones. I sort of understood, because as you’ve probably noticed, I tend to bend the oncology rules and keep my life as normal as possible. After being at multiple hospitals, I’ve figured out that everyone has a different opinion on most of the rules and there are lots of gray areas. However, weight bearing and non-weight bearing seemed pretty black and white to me so crutches were really limiting. My rule-following paid off though, because my surgeon was impressed by my range of motion and lack of pain. He decided I didn’t need to go back for the standard six-week checkup and could instead wait until 12 weeks (the end of this month). It takes up to six months to be able to tell if the surgery worked, so I won’t know until I get an MRI this summer. Life got a little bit easier as I got stronger and more comfortable on the crutches, which also happened to be about halfway through the six weeks. At that point, thinking about the time I had left on the crutches was increasingly bearable. At 5.5 weeks, my family was going to be away for the day and I wasn’t sure how I was going to carry my food to the table. My surgeon said that the six-week mark was somewhat arbitrary so I could start weaning off the crutches around 5 weeks. At that point, it’s not the standing weight that would be a problem, it would be if I twisted it, so I just had to be careful. I started putting my right foot down with a little weight when I walked, and the nerves on the bottom of my foot were so overstimulated – I could feel every little bubble in the carpet. I slowly worked up to only using one crutch, and finally walking without them for part of the day. Friday was my first day completely crutch-free. Overall, the six weeks went by faster than I expected, but only because I have very helpful friends and family! I plan to have my left knee done in August, and I think that will be less obnoxious because I’ll be able to drive myself places. I’ll also be able to go outside and sit by the pool instead of being stuck inside the whole time. Even more important than my orthopedic appointment was my six-month post-transplant bone marrow test. I have been panicking about this test for weeks now (but a huge thanks to my friends for keeping me sane). I still haven’t really had any of the graft vs. host disease that I was told in August was my best hope for a cure, so that’s a bit terrifying, and I relapsed six months after my first transplant, which didn’t help the nerves. On Sunday, after having lunch with some friends, I noticed a voicemail from my doctor. I knew it was the results, and I briefly debated whether I wanted to know before or after my drive home. Luckily, sitting there in a parking garage, I heard the words “good news” and I don’t think I stopped smiling for the rest of the day. I’m six months cancer-free (thanks Matt!!), and don’t have my next bone marrow test for another six months! I can finally make real plans! Obviously, this news was a bigger relief than I can put into words. I had begun planning the rest of my year, but it was hard to get too excited about any of it until I had these test results. I’ll finally go back to school for spring quarter (April-June). Oddly enough, the classes I need are mostly being offered online, so even though I’ll have 18 credits, I will only have class Mondays and the occasional Friday. Even so, I’ll be back in Philadelphia and couldn’t be more excited to see everyone. My schedule is pretty flexible, so come visit! I was originally expecting to graduate in June, but four relapses later, I will need one more term to finish my BS/MS program. I’ll be taking summer off to go on a cross-country road trip with my friend Jenn, and finishing up my classes in the fall. Drexel only has June graduation ceremonies, so I’ll be walking early (June 13) with my friends instead of going back to walk late next June. Even though I won’t be quite finished, I can’t even tell you how many times in the past few years I’ve wondered if I’d ever get to graduate so it’s pretty exciting that I’ll actually be there in 98 days. I had a cardiology appointment to check on my heart strain. It looks better after two months on medication, and my doctor expects it to continue to improve. She increased my dose because I was tolerating the low dose, but the medication lowers my blood pressure. After a few days of the higher dose, I’ve been feeling a bit lightheaded so I’m going to ease up to it instead. I also had an enlarged aortic root, which is calculated based on body surface area. I think it was normal before all of my relapses, but then I lost weight. As I gain some weight back, it is less enlarged for my body surface area, even though the size hasn’t changed. So that’s good I guess? I’ve been staying really busy as usual. I’ve met up with some of my friends and gone to a lot of camp planning meetings. I gave up my newsletter position at Camp Sunrise in order to step up as co-LIT (leadership in training) director with my friend Casey, which I’m both excited and nervous about. I’ve gone to a lot of Susie’s soccer and basketball games and done a lot of homework. Thank you to everyone who drove me around and carried things for me while I was on crutches! This past weekend was more exciting because I was finally crutch-free! Jenn was home for the weekend and we saw Seussical at Glenelg (nice job James!). Matt also came home and the two of us went to a wedding on Saturday. It was a beautiful celebration of two amazing people, and it was fun to see so many people from camp, past and present. Sunday was our camp reunion, which was at a roller skating place. I wasn’t originally planning to roller skate, but then I changed my mind…and who is really surprised that I went roller skating on my third day crutch-free? It was exhausting for my right leg but definitely worth it, and I didn’t fall at all (…thanks to a wonderful catch by my friend David the one time I really lost my balance). I could barely walk that night, but I was fine by the next morning. The kittens are doing well and continue to be a great source of entertainment. One day, I knocked a crutch over onto Clyde, who somehow got stuck in it. Terrified, he ran into another room, still stuck in the crutch, while I sat helplessly on the couch, unable to get up and help with only one crutch. Luckily, my mom was here to help him out. He and Sam are so sweet together – Sam was stuck in the bathroom one day and Clyde pushed the door open to let her out. Thank you all for your thoughts, prayers, and encouragement over the last few weeks. I’m so excited I finally had a great news update! At this point, my appointments are only about once a month, so if you don’t hear from me, no news is good news. My next bone marrow test won’t be until August. Keep donating blood and encouraging people to join the bone marrow registry! Also, if you have time, I have one more favor to ask. I’m working on adding a resources page to my blog for patients and their family/friends and I need your help. If you or a close family member or friend had cancer, I'd love your input! It would make this project much more valuable because everyone’s experience is so unique. Thank you, love you all!
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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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