Hey everyone! It's way past time for another update, but hopefully most of you have figured out by now that no news is good news. I've been getting back to my normal healthy self and have been so busy I haven't gotten to post an update! Since my last post, I've enjoyed a normal Thanksgiving and Christmas, gone skiing, traveled around northern Arizona, experienced Las Vegas, enjoyed Hilton Head Island and started classes back on campus at Drexel! I've had a great few months! Medically, things are settling down but I've continued dealing with side effects from the high doses of chemotherapy and the week in intensive care following my septic shock incident in August. I can't completely straighten my knees, and I'm not sure when that started so it's hard to pinpoint exactly what caused the problem. There have been a few issues, so I think it was a combination of things. When I was up at CHOP in September, my knees had been really stiff, and that stiffness got better but never completely disappeared. Eventually, I realized I could not straighten my knees. Whenever I tried, it felt like my kneecap was going to pop off which was incredibly painful. Nobody had any clue what to say about that but a lot of people looked at me like I was crazy since they'd never heard that before. Eventually I had a physical therapy evaluation. The tendon that helps hold the kneecap in place was extremely irritated so my pain made a lot of sense. They could press anywhere on my knee and it didn't hurt except for on the patellar tendon. I started physical therapy a week or two later and got some stuff to reduce the inflammation. I could finally straighten my knee without hurting my kneecaps when I was sitting on the floor stretching, but I was still walking with my legs bent. At first, I thought they were just used to being bent but then my therapist determined that my quadriceps muscle, which pulls the leg straight, is too weak to fully straighten my leg. If she pressed it, my leg would straighten while standing, but I can't make it straighten by myself. My muscles are getting stronger and my legs are getting straighter but they still aren't quite right. They don't get stiff anymore though, and when they do, riding a stationary bike helps a lot! It's amazing how long it takes to recover from one week in intensive care where I couldn't walk. No wonder I lost 10 pounds - it was all muscle! I have to get monthly antibody infusions since my modified t-cells are killing my antibody-producing b-cells. In November, I got my infusion at Hopkins for the first time since I had been at CHOP for the previous infusions. They are very cautious, so they start it extremely slowly to make sure patients don't react, and then they speed it up. CHOP does the same thing, but not to the same extent, so the Hopkins infusion took much longer. In December, I had my 3 month bone marrow aspirate and biopsy at CHOP and they gave me my IVIG while I was there. As it turns out, the insurance is much more willing to pay for it when I get it there since it's part of the CART study contract. When I go to Hopkins, they don't see it that way and they want me to have a low enough level to qualify since it's really expensive. None of my doctors are comfortable with me getting down to the requirement level since I can't produce my own antibodies at all. Luckily, it's easy to get them at CHOP since I'm 5 minutes away at school! My dad and I went on a trip to Las Vegas and Arizona two days after my December bone marrow aspirate, before we knew the results. I knew it was going to be an amazing trip either way, but it was either going to be one last trip before I was back in treatment or a celebration of all the great things I can do now that I’m healthy. We found out that everything still looked great just a few hours before we went to see Shania Twain! What a great night! Last week, Phillip took me to my appointment at CHOP for bloodwork and my IVIG, The benadryl to prevent a reaction put me right to sleep (leaving him bored to take pictures on my phone). It takes a few days for the t-cell test to come back but later in the week we got an email saying that everything looks good! It can be hard to see the t-cells so they look for b-cells. If they don't see any, my t-cells are still doing well. Yay! This weekend we went on our annual cross-country ski trip in Potter County, PA. I was really worried that I wasn't going to be able to ski much, so the first day I skied around some fairly flat trails with my dad and we never went too far from the parking lot. We determined that I had skied over two miles, so the next day I decided to try one of our normal routes that has a nice downhill to the bottom of the mountain. At the beginning, there was a big downhill and I wiped out twice because my legs were too weak to effectively slow down on the packed snow. I decided to keep going and I'm glad I did. The conditions were much better on the rest of the trail and I only fell once more during about 4 miles. I ate lots of food and it was really nice to see everyone since I was stuck in Baltimore during this trip last year. We went downhill skiing on Monday which was a lot of fun but very cold! I’m always freezing, and I don’t think I could have worn enough layers to stay warm. Even with hand warmers, my hands were frozen! Also, the downhill equipment is MUCH heavier than x-c equipment so it was hard to control my skis at times. I didn’t have enough leg strength to press my boot down hard enough to snap in my ski; my mom had to push it for me. I mostly stayed on the easier hills but it was great to be back on skis again. I am so sore though, and I have slept a ton since the weekend. Being back at school has been amazing! Moving in was quite an adventure since my apartment is on the second and third floors of the building. It's been really good for me to do all those stairs but the first few days were exhausting. I spent a lot of my first week cleaning and organizing but I'm all settled in now and the other girl I'm living with is really nice and easy to live with! Since I'm not going to physical therapy anymore, I haven't been able to ride a stationary bike. We went to Dick's after I moved in, hoping to get a fairly cheap but highly rated model we had seen online. They only had expensive models on the floor, but luckily we asked and someone had just returned another model. As it turns out, when people return models they don't keep on the floor, they just want to get rid of them...which is how we walked out of there with a $30 stationary bike. When my knees get stiff, a few minutes on an easy resistance helps me loosen up, or I can use a harder resistance to actually try to build muscle. It was a lot easier to get back into the routine of being at school than I expected. I had signed up for 3 classes on campus and 3 classes online which was a total of 18 credits. I waited until the first week of classes to decide which one to drop since I didn't really want to take that many credits. My decision was made easier by the fact that I couldn't get from my first class to my second in the 10 minute window between classes. I only have class on campus two days a week, and they're 80 minute classes so I have plenty of time to rest between walks. The five classes I have left are interesting so far! There's a lot of reading but so far they're going well. My Electronic Publishing class has been a little bit about blogging so far. I'm looking forward to seeing what I can get out of it to improve my blog! One of my other classes is called Techniques of Speaking, and we have to give five speeches throughout the term. I'm terrified but I know it'll be a good experience. It was really nice to have a chance to travel before school started back up again. My dad and I went to Arizona at the beginning of December while my siblings were still in school. Leading up to our trip, I got nauseous whenever I would stand or walk for too long so I was a bit nervous about how much I’d be holding us back. I couldn't walk through the whole grocery store and I would usually put a chair in the shower just in case I needed it. My doctors gave me some motion sickness patches which I could put behind my ears and change every three days. They helped tremendously - I only needed to rest when my legs got tired rather than because I didn't feel well. We flew in to Vegas and saw Shania Twain before continuing on to the Hoover Dam, Grand Canyon, Canyon de Chelly, and a lot of historic Indian sites and scenic drives, among other things. We stopped in one little town called Jerome which was recommended by a friend. It had so much history and we stopped at Hilltop Deli, which had an entire room filled with shelves of old-fashioned cane sugar soda. There were more brands and types of soda than I'd ever heard of, and it was delicious! I had never been to Arizona other than our layover in Phoenix on the way to Hawaii so the whole trip was really cool! We saw Mystere, one of the Cirque de Soleil shows, the night before our flight home from Vegas which was pretty crazy, and we rode the roller coaster off The Stratosphere more than 100 stories up! The whole family went to Hilton Head after Christmas which was pretty relaxing. We played a lot of mini golf and I learned to ride a tandem bike. It's a lot harder than it looks because the two people have to pedal at the same speed. I was sitting behind my dad, so it was hard to see over him to predict when we would be slowing down. If he stopped pedaling and I wasn't expecting it, my feet would fall off the pedals. We figured it out though, and I could easily take pictures while riding since I didn’t need to worry about steering or braking. It was really nice to be able to ride on the beach! We had the opportunity to check out Savannah, GA and Charleston, SC while we were down there which were both really cool cities. I'm looking forward to seeing more of my Drexel friends now that I'm settled in. As I get more energy, I won't have to base all of my plans on "that's too far of a walk after the walking I've already done today" which will be nice! If I get a fever, I still have to go to CHOP but I am following their fever rules which are more lenient than the ones at Hopkins. I am only on one medication, which is sort of optional since CHOP would've stopped it by now but Hopkins would continue until March. I'm still working on building my leg strength and I have a feeling that will take a while to fully return. My hair is getting long enough that I don't always need a hat to keep my head warm, but it's definitely not long enough to keep my head warm outside! I think that’s all of my updates so I guess it’s back to my homework and co-op job searching now… Thanks, as always, for reading my ridiculously long posts and for all the thoughts and prayers!
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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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