It’s been a while since I posted an update, but apparently today is World Cancer Day and I’ve been promising updates for weeks. I thought this was going to be a pretty short update, but you know that rarely actually happens. When I last posted, I was waiting for the results of my skin biopsy from the rash on my chest, which we were hoping was some graft vs. host disease. Unfortunately, it came back inconclusive. It may have been mild GvH, but it wasn’t enough for them to officially diagnose. They thought maybe I was allergic to something, so I took my necklace off for a few weeks even though I was fairly certain that wasn’t the problem because I’ve worn it for years. Sure enough, I was still itchy. Although I’ve never had any symptoms of gut GvH, the doctors insisted on doing a lip biopsy. OUCH. I was so glad I refused it right before Thanksgiving, because it was a while before I was eating comfortably again. I turned down tacos one night because I knew they’d be miserably painful to eat. When I turn down tacos, you know it’s bad. A few weeks earlier, I had been told that my Hickman line could come out as soon as my bone marrow came back clear at the end of November. I was thrilled when I got my test results, and I asked again about the line. The team wanted to wait for the lip biopsy results. At that point, we got extremely frustrated. There’s one doctor we don’t see very often, and at our next visit she was the unfortunate one seeing me the day. We came in with a long list of questions and may have ended up crying (hard to believe, I know…). Basically, I was tired of the criteria changing and had no idea how the lip biopsy affected my Hickman removal. If the biopsy is negative, would the Hickman come out? What if it’s positive? How does this change anything?! What do you really expect to find in this biopsy anyway? Oh, and by the way, you want some inflammation, but I can’t have my knee surgery because it will cause inflammation? Huh? As we expected, she didn’t really have all the answers but promised to nag until she did. In the end, we got a good laugh because she told us we normally seem very composed. I’m pretty sure nobody else in there would call us composed – they’re very used to us crying easily by this point. Surprise, surprise, the lip biopsy was negative. The team finally agreed that moving forward with the core decompression knee surgery was a good idea, hoping it would cause some inflammation and stimulate some GvH. Due to osteonecrosis from all the steroids, the bones in my knees are dead and starting to collapse. Core decompression surgery involves drilling tiny holes into the dead parts of the bone and packing them with stem cells, hoping that this will bring the necessary blood flow and oxygen back to the area. The team also agreed that my Hickman could finally come out, but it might as well be combined with the knee surgery to limit my trips to the operating room. I thought Hickmans could come out at the bedside, but my doctor said no. I should’ve pressed the issue because it turns out he was wrong. It took a while to schedule the surgery, but I felt much better knowing there was a plan. I was disappointed that I couldn’t fit both knee surgeries before spring quarter starts in April, but it will be good to have some time in between to build up my strength and see how the first one is working. Besides all that, December was pretty good. Although the occasion was sad, it was amazing to have the whole family together for my uncle’s celebration of life, and having hundreds of people attend was such a testament to how many lives he touched. In one of my earlier updates, I posted pictures of the kittens at his house. Matt and I decided to surprise our mom with one of the kittens, and we chose the one my aunt said seemed to have inherited some of Uncle Dave’s personality (which is true, she had us on the floor laughing her first night here). Mom and I had a hypothetical conversation about what we’d name a kitten, and she mentioned always having a calico cat named Sam growing up. We brought our own Sam home that Sunday night, and surprised Mom when she came home the next day with my grandma. My grandma stayed for a few weeks after that, enjoying a break from Maine winter! We got a huge Christmas tree, as usual. It was great to see family for Christmas and I was so excited when my friends came home for break. Now that so many of them are out in the real world, some of them were only here between Christmas and New Years but we made the most of it. We hiked, made cookies, drove around looking at Christmas lights, ate lots of food, rang in the new year, and went ice skating. I also went to a Baltimore Blast practice with Cool Kids Campaign. I’m not very good at soccer, but we played volleyball for a while and that was much better (though I could barely move later that day). I also went to my first Baltimore Blast game which was a lot of fun! We went on our annual ski trip the weekend before my surgery. There wasn’t actually enough snow to cross-country ski, so we didn’t even take our skis. Instead, we went to the Corning Museum of Glass, which I highly recommend! There was a ton of stuff to see, including glass from ancient Egypt, or you could spend most of the day watching live demonstrations (such as the glass rooster that took about 10 minutes over an open flame). We also went hiking and saw bear tracks. Luckily, we didn’t see the bear. To celebrate my last day crutch-free, I went hiking in Harpers Ferry and drove to a camp meeting – my last driving for six weeks. My surgery was scheduled for January 19, and I met with orthopedics the week before. I was expecting to do my left knee first because it looked worse in the x-rays, but after looking at the MRIs he said they were both equally bad and I could choose. I ended up picking my right knee less than 12 hours before surgery because I can’t drive with that one. This way, my second surgery won’t be as restricting. Also, my left leg was stronger so I figured it would be better able to handle all the hopping around on crutches. The surgery went well, and my Hickman is out! I still have my port so I don’t need to get stuck in the arm for labs. When I met with the team taking my line out, they mentioned that this is frequently a bedside procedure, they schedule the appointments as consults because it’s so quick. I was pretty irritated that it could’ve been done earlier, but oh well. Even though I have to sit in the shower at the moment, it’s still so amazing to actually be under the water instead of trying to keep my line dry. It’s crazy how appreciative you are after six months without a normal shower! Even after the surgery, I don’t have any major GvH. My incisions are healing really well though, so at least that part of my immune system is working well! I was itchy again for about a week but my rash has disappeared. If it was GvH, it wasn’t anything near as significant as they originally hoped for. At this point, we aren’t looking for acute GvH anymore, we are looking for chronic. What does that look like? It can look like anything. Dry mouth, joint issues, swelling, fatigue, and who knows what else. I don’t think I’ve had much, but I’m hoping that the little bits I might have had were enough to kill any residual leukemia. Overall, I feel great. My hair is growing quickly, as usual, though I’m still not sure how to describe the color. I’m getting much better with the crutches as my arms get stronger, but I’m still counting down til I’m finished with them. I really don’t like being so dependent, but my family and friends have been very helpful. My next appointment is in a month, and I’ll have my six-month bone marrow aspirate. I’m only a little nervous… I’ve been staying busy with classes. I’m taking 18 credits, three undergrad courses and three grad courses. It’s a lot, but I can’t do much else on crutches anyway! After six months off, it was a little overwhelming at first but I’m so happy to have productive things to do again. I should be graduating in June, but after taking time off last year for my transplant, I need one extra quarter and will graduate in December (if all goes according to plan). I’m hoping to go back to school for spring term (April – June), then travel and enjoy some of my summer before having my other knee surgery. Planning this far ahead hasn’t gone well for me in the past few years, but I’m really hoping that’s finally behind us. A few weeks ago, I was invited to speak at the groundbreaking event for the Ulman Cancer Fund House in Baltimore. After my first transplant, I stayed in pediatric housing, but this house will be specifically for young adults. I’m really excited that future patients will have this option and it was fun to be a part of the event. Plus, I now have a hard hat and a hammer! The event made the news, if you want to check it out. Thank you for your continued love and support! Keep your fingers crossed for good test results next month! And if you have any must-see spots or hikes for a cross-country road trip, send them my way!
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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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