It’s been quite a while since I posted an update but I think most of you know at this point that no news is good news. I’ve been really busy but now that my class is over, I have a little more free time and people have been asking when I’m going to post another update so here it is! I’ll start with my most exciting news…I got my port taken out in May! This is a big but scary step in the life of a cancer patient. No matter how hydrated I am, I’m not usually an easy stick in the arm (almost two weeks after my last labs, I still have a two inch bruise) so my port was nice to have. It was already accessed during my septic shock incident because I was on IV antibiotics, which allowed the EMTs to start fluids significantly faster and probably helped save my life. Right when I thought my port was going to come out last June, I found out I relapsed, so I was a little terrified to let it go right before my upcoming bone marrow check. However, I don’t really need it anymore and it’s an infection risk so it was good to get it out. When I got my first port removed in 2007, they asked if I wanted to keep it and I said absolutely not. I was done with everything cancer-related; getting my port out was the last chapter and I was closing that book and never looking at it again. Turns out it didn’t quite work like that, but the point is, I didn’t keep my port. A few years later when I went to camp, I found out that almost everyone else had kept theirs. I was really curious and regretted getting rid of it without even seeing it. This time, I knew I wanted to keep it which I think says a lot about how my attitude has changed over the years. It doesn’t really look like what I expected, and we found a port access needle so I can try to access it myself! Part of the reason I don’t need my port anymore is because I transitioned to weekly home immunoglobulin (antibody) infusions instead of monthly IVIG. This helps keep my level steady instead of spiking then dropping throughout the month. My infusions were incredibly painful at first but they’re getting better. Each week, we put 5 grams of antibodies into a syringe, put it in the pump, stick two little (less than a centimeter long) needles in a few inches to either side of my belly button and turn the pump on. After about 20 minutes, it’s finished and there are two bumps around the needle sites. During the first few weeks, the bumps were pretty big and lasted for a few days, but now they are only about the size of a quarter and are gone by the next day. The medicine finds its way around, and since I give it in the same spots each week, my body has gotten used to having stuff injected so there’s more space for the medicine to spread out faster so it hurts less after. However, the infusion is pretty painful for me but it doesn’t sound like it is for most people. To me, it feels like the sting of soda in your nose. We tried infusing it slower but it still stung and then it took longer so we are going to try a different length needle or some numbing cream. I don’t need to go to Hopkins or CHOP very often but they do still want labs done every so often to check my counts and antibody levels. The home infusions are giving me a good level of protection since, last time we checked, I still did not have any B cells to make my own antibodies. That’s good news because it means my modified T-cells are still attacking them! I have a bone marrow aspirate and more in-depth bloodwork at CHOP next week to make sure everything still looks good since it’s been 9 months since my CART infusion. I get very nervous as these tests approach. It’s nice that they’re less often now, but that’s a lot more time for uncertainty. The first weekend in June of last year was when I came home to find out I’d relapsed again and that week didn’t pass without nightmares. In happier news, my hair is growing quickly! It’s gotten to an awkward length where I have to just let it grow out. It’s much wavier this time than it’s ever been before, and it’s much darker than last summer but still has a few highlights. What have I been up to that I haven’t had as much time for blogging? I’ve been working full time as a technical writer/editor at APL for my co-op for almost three months now. Now that I’m involved in a few different projects, I’ve had a lot more work to do and it’s usually a good variety which I really like! I was also taking an economics class which just ended last week. Speaking of school, I was officially accepted into the accelerated BS/MS program for Scientific Communication! Because of all of my reduced courseload terms during treatment, I have to give up my third six-month co-op next spring/summer so I can take classes instead but I’ll still be graduating on time with two degrees thanks to AP credits! I decided not to take any summer classes because I’ll be busy enough already so I have a break from school until late September, when I’ll move back to Drexel. I already have an apartment set up with a few other people close to campus which is a relief. I’ve been enjoying a lot of summer activities that I didn’t get to last summer. Our pool is open, and even though I get cold faster than most people, I’ve been swimming more times in the last month than I did all summer last year. I’ve also gone to a bunch of concerts since I’m not as worried about being around crowds of people. I went to Nashville on Tour in April, Kenny Chesney in May (he is SO deserving of all his Entertainer of the Year wins!) and WMZQFest with Lady Antebellum in June. Two of my friends and I surprised our friend Jenn with tickets as an early birthday present. Keeping something like that a surprise is a lot harder than I expected but we managed and had a lot of fun! When I first started my internship, I was so exhausted by the end of the week that I didn’t do much on the weekends. Now that I’m more used to the schedule and my friends are home, I’ve been a lot busier! I volunteered at SunSibs, a camp for kids whose siblings have cancer, during Memorial Day weekend which was a blast as usual and I’ve gone to a few bonfires and caught up with my high school friends. My grandma came down for a few weeks and inspired me to finally finish crocheting the scarf I started in March. It’s a little warm for it now but it’ll be nice this winter! I got yarn to start a blanket but haven’t made any progress yet. My friend Sophia came to visit from Long Island and we had a fun but relaxing weekend catching up by the pool, crocheting and making desserts with our fresh-picked strawberries. This past weekend, I went on my first hike in a long time, probably the first once since my relapse in 2013, with my friend Alicia who came to visit from Drexel. We hiked to a waterfall/swimming hole and I actually stayed in the water for a while and managed to get warm again after, unlike our hike in Hawaii which was the last time I swam in a river. We picked strawberries and cherries, went to a bonfire, and went with my family to the Cool Kids 5K, where Alicia, Susie and my dad all won medals! It was a great event again this year, and it was nice to see some people from camp who came to run and also some of the Cool Kids families I used to see during my internship last year. It was a fun and exhausting weekend – definitely a great way to spend the weekend after finals! I think that’s about all that’s new in my life! My family is doing well - everyone is pretty busy! My brother graduated at the end of May and will be headed to College Park in the fall! I couldn’t convince him to join me at Drexel but my cousin will be! If you’re still reading, I’m impressed because I know this has been a long post but thank you as always for your support! I’ll post again next week once I get my results from CHOP! 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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