Medically, this week was pretty boring, but if you remember back a few weeks, boring is better. I was originally supposed to be inpatient for part of this week, but my stay got postponed until next week because of my fertility preservation efforts (see post below this one if you’re interested in that adventure). In addition to these two posts, I added an about me page for those of you who don’t really know me because you ended up on this page when one of my friends shared the link with you. I also added a form where you can submit questions or comments if you don’t want to post them publicly. My next website effort will most likely be adding a photo gallery so I can include other fun photos I’ve taken that don’t fit well into my blog posts but I haven’t gotten that far yet. Also, for those of you who asked for the cheesecake recipe, it’s coming! I found the cookbook but haven’t typed it up yet. One of my new favorite pasttimes is wasting time on Buzzfeed and sending the best ones to my friends to help them procrastinate (to any of their parents reading this – ignore my last sentence). On Monday, I decided to do something more useful so I started reading The Fault in our Stars around dinnertime. I finished it around 1, which is much later than I can usually manage to stay up these days but there was no way I was going to sleep without reading all of it. Other fun activities for the week included picking online classes for winter term at Drexel, cleaning out some of our pantry, removing the rest of my wedding nail polish (I only mention this because it took a ridiculously long time), looking at the professional pictures from the wedding (gorgeous), riding an adult bike with training wheels (harder than it sounds) and Halloween festivities! I went to my sister’s Halloween parade at school, wearing a wonderful snake hat I received as a gift the night before. That night, I walked around with my mom and her friends’ parents as they trick-or-treated, before meeting up with one of my friends and visiting another friend’s parents and dog. It was a fun and relaxing Halloween and I was thankful to be home visiting with people rather than sitting in the hospital. As I was walking around one of the most popular trick-of-treating neighborhoods in the area, I was amused by how many of the kids recognized me from the crowd at the parade because I was once again wearing my Medusa hat. Numerous kids asked me if I had been at the school, and others just assumed: “I saw you earlier!” I appreciated that they cared more about my crazy hat than the mask on my face. Over the weekend, I spent some time outside because the weather was too perfect not to. The leaves are gorgeous right now and on Friday afternoon a jacket was optional. On Saturday, I went to my sister’s soccer game (she scored two goals!) and team pizza party. This weekend also included a lot of skyping with friends who are either sick or too far/busy to come home which was a lot of fun. This week, we finally found out more of a timeline for my treatment over the next few months. I’ll be inpatient starting tomorrow for a few days to get some methotrexate. I got a lot of this last time, but as far as I know this is all I’m getting this time. I get a high dose tomorrow and I will be in the hospital until I get down to a certain level. Hopefully all goes smoothly and I won’t need any experimental medication from NIH at 2am (yes, that happened once last time. I’m special). While I’m there, I have a radiation consultation. I have no idea what that actually means but I’m sure it’ll involve some important information. Next week, my sister and I both need a bunch of tests done, including an EKG, pulmonary function test, sinus CT scan, and chest Xrays. She also needs to meet with a psychologist to make sure she’s a willing donor. I’m not sure what that does since she’s not old enough to sign her own papers, but luckily she seems pretty willing but doesn’t want the psychologist appointment to take long. My last spinal tap and bone marrow test of this phase (and maybe forever? Trying not to get my hopes up here) are on the 18th. Hopefully my MRD number is what they need to see to proceed with the transplant. On the 25th, I will be officially signing my consent forms, and I also get a “total body irradiation simulation.” Sounds like fun, doesn’t it? The day before Thanksgiving, I get my second line, a Hickman, put in, but it’s an outpatient procedure so I’ll be home for Thanksgiving!! I’ll probably feel terrible after the surgery but I’m so glad my family will all be together, plus my aunt and uncle who are coming down from PA. That will definitely be a wonderful last day of home-cooked food before I’m admitted for my pre-transplant chemo and radiation on Friday. No Black Friday shopping for me! I will have four days of chemo followed by three days of radiation twice a day. My scheduled transplant date is December 6 – Happy new birthday to me! Everyone always asks me what I want or if I need anything. I appreciate all the cards, letters, and gifts I’ve gotten so far (and will eventually catch up on thank you notes) more than words can describe. They always brighten my day, but if you’re reading this now and wondering what else you can do, I have two things in mind for you to do. First of all, if you’re not on the bone marrow registry and you can be, sign up. Go to bethematch.org for more information. Signing up doesn’t mean you will ever have to donate, and you don’t actually give any marrow until you are a match for someone who needs it. Yes, you might be sore for a few days if you ever do donate, but you’re saving someone’s life. Just think about that. I’m lucky enough to have a sibling match, but a lot of people aren’t. Speaking of my sibling match, the other thing I had in mind is sending her some cards/letters/packages. How many fourth graders play two sports plus run 5Ks, know how to program a robot, spell words like subcutaneous and onomatopoeia, play the violin and can say they’re helping save their sister’s life? Not many. Her birthday is the weekend before Thanksgiving, and less than two weeks later (right before some activities that she had been looking forward to and now may not be able to participate in), she’ll be donating some of her bone marrow. She’s awesome. A few people have asked me about bringing food for my family. Some family friends have started a website to organize people meals during my long stay in the hospital, so if you’re nearby and would like the link, let me know. I have a lot of books to read at the moment but at my current rate I’ll be finished in a week so let me know if you have any book/movie/tv show recommendations! I’ll keep you all updated on my inpatient stay this week. Thank you for reading my updates and for all of your love, prayers, and support!
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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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