A lot of people have asked me for an update in the last month, and I kept telling them I had one coming soon. I’ve had an outline for over a month now and I was waiting for one of two things to happen before I posted it so that I had something more interesting to say. Neither of those things have happened yet, but there has been lots of other stuff going on so I decided not to put it off any longer. Plus, writing a blog post is more fun than finals. Yes, Drexel’s schedule is weird and I haven’t finished the term yet. Right after my last update, I got another phone call from NIH. As you can imagine, when the number popped up I was pretty nervous. Had they given me the wrong results or something? As it turned out, they were calling to find out if I was interested in being part of a New York Times article on immunotherapies. Of course I said yes, because what a once-in-a-lifetime opportunity! I think CAR T-cell therapies are so cool and very promising treatments for a lot of cancers, not just leukemia. I signed the consent form, had one of my roommates witness it (so glad they’re understanding of my random medical needs), and the interview was the next day. I kind of forgot about it until a photographer contacted me a few weeks later. The photo editor changed what they needed so he had to come back the next week too. Here’s a cute picture of Clyde because he may very well end up in the NYT with me (and because I have too many cute pictures of him not to share). I don’t think the article has been posted yet but I will absolutely be sharing it once I have it! Speaking of articles, APL (where I interned last summer) had a bone marrow drive this spring and are in the process of planning one for this summer as well. I pushed for it, but I’m no longer there to make it happen so my dad and another person from a cancer support group there did all the work. To spread the word about the drive and its importance, the communications office ran a great article about my story and why my dad and I wanted to have a drive. My dad has been getting lots of emails from people about how it made them want to join the registry, which is exactly what I hoped for! We also have a potential match from our drive at Drexel in November. It makes me so happy to take all the craziness from the past few years and make a difference for other patients. Classes went pretty well this term, though going from two classes in person to five (plus one online for a total of 18 credits) was a lot. One was ballroom dancing, which my family says doesn’t count, but it was still three hours a week I had to be in class. I’ve been on the waitlist multiple times and it was a lot of fun once I finally got in. My bio class full of bio majors went surprisingly well and I managed to get As on both of the midterms. Unfortunately, the final this past week most definitely dropped my grade. I asked to take it early because of my appointments next week, but that didn’t leave me enough time to fully prepare with all the other projects and presentations this week. I don’t think I’ve ever had so many different projects and papers due in a 5 day period and there are only so many hours in the day. Oh well! I’m coming home on Tuesday for almost two weeks before summer classes start. They’re mostly online, which wasn’t completely intentional, but it will be nice to have long weekends again so I can still do fun summer things! My next bone marrow aspiration, spinal tap, and various other tests are on Thursday, and I’m pretty nervous as always. Whenever I’m tired, have a headache, or feel too warm, I wonder if I have a fever or am sick again. Usually I’m just stressed or dehydrated. There was a week in April where I was especially exhausted and therefore especially nervous, but I finally went to the grocery store and eating real food made a huge difference. I still haven’t heard the deeper sequencing results from the last test almost three months ago. I doubt it takes that long, so I’m hoping they can fill me in on Thursday. I’ve been to CHOP twice this term and my blood counts are amazingly normal. I think almost everything is in the normal range, which hasn’t happened in years. No B cells means continued subcutaneous antibody infusions, but I’ll take it! Despite the anxiety that isn’t going anywhere anytime soon, I’ve had a lot of fun this term. I was elected as secretary of Gamma Sig for next year, and we welcomed a large spring class including my two wonderful littles. I’m sure I’m forgetting a lot of things, but I volunteered at Broad Street Run (in the pouring rain), went to the NEDA walk, played a game of softball, helped plan a surprise party, and was the team photographer when my friends did Muckfest this weekend. The obstacles looked like a lot of fun, so I think I’ll try to do it next year. I stayed in Philly most weekends this term, though I went home for a few camp and Cool Kids events. The American Girl Fashion Show was a lot of fun as always, and apparently this was the last year. I’m glad I could be there, even if I was barely home for 24 hours because I wanted to be back to celebrate some friends’ birthdays the next day. I was also home for the Camp Sunrise gala and SunSibs weekend. It’s really great to help plan camp all year and then see it all come together. It was an extra special year at Sibs because it was my sister’s theme, Spaced Out. We got to see Jupiter and its moons through a telescope (thanks Popscope!) and our shirts glow in the dark. I also got golf cart privileges for the first time. My brother decided to join us for camp this year as well, so it was the first time all three of us have been at Sibs which I was really happy about. I’m glad he had fun and I’m hoping we can all be there again next year! In 2014, my first year at Sibs, I felt like I was invading in a way because it’s a weekend for the siblings to have fun away from their sick siblings, and there I was less than 6 months after my bone marrow transplant. I’m so glad Susie was fine with me going, because I love being a part of it. I think in a lot of ways treatment can be harder on the siblings than the patients. They’re so frequently overshadowed by the one who is sick. I got more care packages than I knew what to do with, but I didn’t need much entertainment due to limited time between appointments and classes while my siblings were at home entertaining themselves. Also, I personally find helplessness one of the worst feelings. A few years ago, when my brother had surgery, I went to visit him in the hospital and it was so hard to see him in that much pain and not be able to do anything about it. As much as I hate being in pain, I think it’s easier than watching someone you love in pain. Anyway, Sibs is super important to me because siblings deserve so much appreciation. My siblings have been amazing even though I know it hasn’t been an easy few years for them. An exhausting 4 day weekend without wifi was an interesting way to go into finals, but I’ve survived for the most part. My knees and overall strength are getting a lot better. I’ve been going to PT twice a week, and now that I’ve gotten stronger and can fully straighten my knees, progress is much faster. I notice improvement from week to week. At the beginning of the term, if I walked too much I was in a lot of pain the next day and getting to my room on the third floor was a struggle. It’s been a long time since I’ve been that sore (though maybe tomorrow from Muckfest today...). I’ve got a few things to finish up before I head home this week. After my appointment on Thursday, I have a week to anxiously wait for test results, relax by the pool and catch up with my friends before summer classes start. Almost all of my high school friends just graduated (congrats everyone!) and are moving on to awesome jobs and grad school, so it’ll be nice to catch up before we’re all so far apart. I have a lot of friends graduating from Drexel this week as well but luckily most of them are staying in the area. I’m not quite ready for the real world and am very thankful for my five year program! Thank you all for checking in and for the continued good thoughts, I appreciate your support more than I can describe. I’ll keep you updated on this week’s test results, the deeper sequencing, and the article :)
1 Comment
Donna Larkin
6/6/2016 06:52:45 am
Love the updates - Continue to think about you and your family all the time - Sounds like you stay very busy :) Love ya lots
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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
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