The past two weeks have been quite a whirlwind (no tornado pun intended, but that certainly didn’t help)! I’ve had a bunch of appointments, but I’ve also had a lot of fun and done so many normal things that sometimes I have to remind myself that I won’t be feeling this good for much longer. On the 15th, I had an appointment at Hopkins for a kidney test. My dad was having surgery to remove a kidney stone that morning and my mom had to drive him, so I almost went to Hopkins alone for the first time. I still had a headache and wasn’t particularly thrilled at the idea of that much driving by myself, but luckily my brother came with me. It was a nuclear imaging test, so they injected a small amount of radioactive stuff and then did bloodwork every hour. The email said four hours, but it turned out to only be three which was a nice surprise. In between the tests, Matt and I wandered around the hospital, gift shops, and cafeteria. He also gave me some great back rubs which helped a lot with my tension headache and made me functional enough to see one of my friends and go to a camp meeting that night. The next day, my parents and I went back to Hopkins to meet with the doctors about the plan. It’s much better than I expected, and it wasn’t an “I told you so” meeting like I thought it might be because they said I should do a second transplant after my CD19 trial in 2014 and again earlier this year right after CD22. Anyway, the current plan involves two weeks of chemo, which I started last Friday, and then another bone marrow aspirate and biopsy to see if that was enough to get rid of the little bit of leukemia. If so, on to transplant. If I’m not in remission after those two weeks, I’ll get more chemo before we check again. Transplants are significantly more effective when patients are in remission going in. The idea is that the two weeks of chemo will be enough to kill the leukemia, but keep me in good enough shape that I can handle a full transplant prep, rather than reduced intensity, which isn’t as effective. I’m hoping for effective here because the success rates for second transplants are already terrifyingly low. While I was there for the meeting, they also gave me some muscle relaxer. It put me to sleep when I got home but managed to get rid of my headache after a few days, which was perfect timing for my weekend at Drexel. I had been starting to wonder if going was a good idea after all, but I’m so glad I did. On Friday morning, I headed to Philly. I got to see a few friends that evening and checked out a new restaurant. I slept for a lot of Saturday because of the muscle relaxer, but I was headache-free for the Dixie Chicks concert! I went with my roommate from freshman year, so it was great to see her and the concert was a lot of fun too! It was a beautiful night for a concert, especially on the lawn. We also got to meet the opening act, who we had never heard of but enjoyed anyway. Sunday was a little bit rough because I didn’t have much to do in the morning and too much time to think is never a good thing for me. I started packing which was a challenge because I only had a duffel bag and my backpack to bring home everything I wanted until January. I focused on tank tops that will work well with my Hickman and comfy clothes for the hospital, but I also needed a few nicer outfits and some of my warmer stuff for the fall. I’m hoping I can make one more trip, preferably with a car, but we’ll see. One of my friends came over Sunday afternoon, and I felt much better after crying all over her (sorry Maddy!). That night I went for a long drive with one of my friends to pick up her dog. It was great to have a distraction, and ice cream was an added bonus. It was nice to be back in my apartment and to see some of my roommates, plus classes started on Monday so I spent some of the morning checking out my online classes. I went to an in-person class in the afternoon and stayed after class to explain my situation to my professor. The class only meets three times a term and is an independent project, so it seemed like a class I might be able to continue remotely. I was a little nervous because I’ve never had the professor before and I know that’s kind of a big request from someone you don’t know, but she was great and agreed to work with me. I also chose two online classes to keep. During my last transplant, I didn’t take any classes, so this may end up being too much but it’s so hard to tell. So far, they don’t seem too bad and my professors all understand the situation which helps. After dinner with friends on Monday, I took the bus home. I had a spinal tap and a bone marrow aspirate and biopsy on Tuesday morning. It went much better than my last one at NIH. I really didn’t want another spinal tap so soon after my spinal headache, but I had a PA doing it instead of a fellow, and she used a different spot. At Hopkins, once you’ve had as many of these procedures as I have, they are pretty understanding and generally let me have the best of the best doing my procedures. It’s a good thing I was feeling better than last time, because the huge thunderstorm we knew we were going to hit also ended up producing a tornado, which went right up our street. During the drive home, I was getting pictures and videos from my brother of the downpour, gutters overflowing, one tree in the pool, and then another. It was a very slow drive, but it stopped raining by the time we got home. Our house isn’t far from the end of the street, but we couldn’t get there because there were multiple trees down. My siblings came down with pruning shears and they worked with my mom to remove enough branches from the tree across the road so that we could drive the car past. I just watched and took pictures because I wasn’t completely awake and functional yet after the procedure. There were a lot more trees down on our road, but luckily we could get to our driveway after we got around that one. There was a pile of 7+ trees blocking part of the driveway, but there was enough room for our cars, and later those of some of our neighbors who couldn’t get to their houses and left their cars with us. Our apple tree, along with dozens of others were down, and the two in the pool were even crazier in real life than I expected from the videos. Just up the street from out driveway there were quite a few more trees down and we went on a walk to see what the rest of the street looked like. It’s a good thing my procedures went better that day, because there’s no way I would have been exploring after the last one at NIH! We walked a lot farther than I was planning to so I didn’t feel great, but the damage was so unreal. Lots of neighbors were out as well, checking the damage to their properties and making sure everyone else was okay. Our street is fairly important for emergency vehicles, so by the time we got back to our house, the county was already working on clearing the road. They had a Gradall machine with a big grabber thing to pick the trees up and move them to the side of the road. A snowplow followed behind, pushing the rest of the debris off the road. It was pretty impressive – no chainsaws or anything. Our street has a lot of split-rail fences broken underneath the huge piles of debris instead of snowbanks, but luckily almost all of the houses were fine. When we got back from our walk, we checked the basement to see if it had any water in it like some of our neighbors. Sure enough, we had water throughout about half of the basement. I mostly held flashlights while my mom and sister mopped. Eventually, my dad and brother came home and we got the basement as dry as we could without electricity. It took my dad a really long time to get home from work because the traffic lights were out on an already overcrowded highway, but eventually we went out for dinner in another town that still had power. It was nice to charge our phones because when we lose power, it’s usually out for days. Tuesday felt like at least two days in one and by the time I got in bed, it didn’t seem like my procedure had been that morning at all. I was a little stiff, but I think all the walking around helped with that. Much to our surprise, the power came back on Wednesday morning. We spent the day removing the trees from the pool and the biggest pile from the front yard. I felt somewhat unhelpful because I was starting to get a headache and was trying to avoid bending over too much. I was worried I had another spinal headache, but eventually I realized all the raking, clipping, and lifting were causing another tension headache which was easy enough to fix. On Thursday, I finally had some time to start working on my classes. I dropped three of my six classes and am hoping to keep the rest. I may regret that later, but I’m hoping I can handle them. It would be disappointing to withdraw or take incompletes and finish them later, but it’s good to have those options if I need them. My doctor emailed me some preliminary results from Tuesday’s tests, which basically showed the same small amount of leukemia. A small, unrealistic part of me was hoping it would have disappeared and this was all a false alarm, but no such luck. The next morning, we went blueberry picking which was fun and delicious. Once my immune system is wiped out, I’m really not supposed to eat things like berries, so I’m enjoying them while I can! I started treatment that afternoon. I got a dose of Vincristine at Hopkins and started Dexamethasone, a steroid. Once I got home, one of my friends came over for dinner, and it was great to catch up because she just got back from traveling around South America. After she left, I went to another friend’s grad party where it was nice to see some people I hadn’t seen in a while. With so many fun things packed around the chemo, it barely felt real. When I got a lot of Vincristine when I was younger, it caused terrible jaw pain which got worse with each dose. I haven’t had Vincristine in years, so I don’t have any jaw pain, just a weird sensation in my jaw that I probably would barely notice if I didn’t know about the jaw pain potential. My donor is still TBD – my sister is a full match just like she always was but my brother and parents are on the table as well because they’re all half matches. There are two ways to harvest cells for transplants, and one results in more graft vs host disease (GvHD). I thought they were pretty set on using Susie again but harvesting her cells differently, but they’re going to take a look at all the options. I’m guessing my brother is more likely than my parents because they prefer younger bone marrow, but there are other factors to consider as well. I had five days of the steroids which is way better than the month straight that I had when I was younger. They’re not without side effects though. I usually get the steroid insomnia a few days after I start them, but this time it hit me on the first night. I slept from 12:30 – 3:30, and by 5am I realized that I was not going to fall back to sleep. I got out my laptop and started working on my homework. I don’t think I’ve ever posted in the discussion boards at 6am on a Saturday, and I probably won’t ever again. My cheeks got the nice red steroid glow (but it’s better than the sunburn I thought I had when I first saw them in the mirror) and I’m a little hungrier than usual, but otherwise nothing crazy. I spent a lot of Saturday doing homework, but then my friend and I went to a Cool Kids Campaign event which was a lot of fun. It was great to see some of the other volunteers I haven’t seen in a while since I’ve been at school. The food was delicious and I won some Kings Dominion tickets in the silent auction. I probably won’t be able to go this season, but the rest of my family can. I was tired enough when I got home that I got a whopping five hours of sleep. I’m one of those people who normally sleeps for eight hours or else I am a huge mess, so that was better than three but still not ideal. I started writing this post once I woke up though, so I’ve managed to be pretty productive with my extra hours. Occasionally, I would get a wave of sleepiness, but for the most part, the steroids kept me wide awake all day, despite the lack of sleep. On Sunday, I went to another grad party and spent the day with some of my closest friends before they all head off to their jobs and grad schools. I’m really excited for all of them, but it was so hard to say goodbye not knowing when we’ll all be together again.
I finished up the steroids on Tuesday, and I’ll be inpatient starting tomorrow for Methotrexate this weekend. I’m hoping for a room with a good view of the 4th of July fireworks like I had for New Years 2013-2014. We could see multiple shows at once which was pretty cool. I’m sure I could have had more exciting plans outside the hospital, but if there’s a time to be inpatient, it might as well be an entertaining weekend. I also realized I’ll probably be inpatient for transplant during the Olympics so that will be some good entertainment! Unfortunately, being inpatient for August means missing camp for the first time since I started going in 2009, which is pretty upsetting. For the past few years, I’ve had internships and wasn’t sure if I could go, but all of my bosses were very understanding so I’ve never had to miss it. This year is the 30th anniversary, and once again I said I wasn’t sure. My summer schedule turned out to be mostly online, so I was planning to miss class for a week to go. I had a record-fast clinic appointment today and I’ll be going to PT at Hopkins. I don’t want to lose all the progress I made at Drexel, but I don’t have a gym membership or the equipment I need to continue on my own. My counts are all still in the normal ranges, which explains why I look and feel fine. Tomorrow (Friday), I’ll have surgery to place a port in my chest, and then I’ll be admitted for the methotrexate. Although the surgery is rather painful for a few days after, it will be nice to have a port so that I don’t need the Hickman for as long. Hickmans are required for transplant, but if I have another line like a port, they can take it out much faster. That means getting back to normal showers and no tubes hanging out of my chest much faster, so I’m all for it. At some point next week, I’ll have another bone marrow biopsy, and if I’m in remission (no sign of disease), on to transplant prep I go! Otherwise, more chemo. This week, I spent time with friends and got ahead in my homework as much as possible before I’m inpatient and stiff from the surgery. I still don’t really need anything, but keep donating blood and joining the bone marrow registry! I promise we will let you know if we need any meals or anything. I’m starting to collect responses for my 100 day countdown. One of my friends will be putting it together so I’m not tempted to peek. Some of you may remember from last time, but for my new followers… Transplant involves ~100 days within 15 minutes of the hospital just in case my baby immune system gets an infection. For me, that means living in an apartment in Baltimore somewhere because home is too far away. One of my nurses told me last time that people do best when they have something to look forward to each day, or some sort of motivation; otherwise, it just drags on. That’s where you come in. Submit stories, memories, jokes, riddles, random fun facts, book/music/movie/Netflix recommendations, or anything else you can think of, and each day I’ll read one submission off my chain. If there are extras, I’ll read two if it’s a rough day. You’re welcome to remain anonymous, but trust me, I’m not going to think it’s weird if you put your name and we haven’t talked in years or you’re my friend’s friend’s cousin. It’s really cool for me to see how far this blog reaches, especially since I originally created it just to keep my friends and family updated. Now, I’ve had people read it from almost every continent. Anyway, all submissions are appreciated, and I can’t wait to read them! I don’t have a transplant date set, but it will probably be toward the end of July so you have some time to think. I still have every chain link from 2013 and will definitely be keeping these too. Another perk is that the colorful chain will brighten my hospital and eventually apartment room, and it’s nice to make visible progress on the 100 days. As always, thank you for all the positive thoughts, prayers, and messages. My phone has been having some issues and doesn’t always receive all of my texts, so if I don’t reply, I probably never got it. I won’t ignore you on purpose! Text me again or message me on facebook. I love you all!
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I’ve been home for a week now and it has been quite a roller coaster. It started out pretty calm – we picked some delicious strawberries, I’ve seen a few of my friends, and I’ve enjoyed being surrounded by so many trees. I didn’t know what to do with all of my free time so I edited some things for people and worked on the Camp Sunrise activity schedule. Starting Thursday, it got a little more exciting, but boring really was better. On Thursday, I went to NIH for my six-month bone marrow aspirate, spinal tap, and various other tests. I finally figured out why I didn’t have the deeper sequencing results yet – my bone marrow samples had never been sent! There was a special consent form, which for some reason hadn’t been brought up either of the first two times they said they were going to send the samples for testing. Anyway, the results aren’t particularly useful at this point. My Versed was pretty effective so I don’t remember much of the procedure, but apparently the spinal tap didn’t go very smoothly. They eventually got what they needed, but it took longer than usual and probably more pokes and digging around than necessary. I ended up with a spinal headache, which is a headache to end all headaches. I get migraines, so that’s saying something. My head hurt so much that it completely masked my sore hip from the bone marrow. I drank tons of water and stayed as flat as possible until Sunday. I was so bored and restless, and it was not how I was hoping to spend my break week. Luckily, one of my friends was home for a few days. When you’ve been friends since elementary school, it’s a little more acceptable to say “sure I’ll hang out and help you pack for your trip, if by help you mean I can lay flat on your bed and make sure you pack everything.” By Sunday, my doctor said I needed to go in for IV fluids and pain meds. Just as I was finally headache-free (and could feel my hip stiffness again, though it wasn’t bad by that point), my doctor came in with the results from my tests. It’s pretty incredible that my headache didn’t come right back. The blood results weren’t back yet, but the bone marrow showed 0.02% leukemia. I’m so thankful that we keep catching it early, but really? How many times do I need to hear I have leukemia, do my parents need to hear their kid has cancer, do my friends and family need to get this news? Five, apparently. There was so little to test that they couldn’t get a great idea of what these specific leukemia cells look like. The targeted T-cell CAR therapies I’ve been getting attack either CD19 or CD22 (common proteins on the surface of leukemia cells). It seems like nowsome of my cells express CD19, some express CD22, some express both, and some might not even express either, so as you can imagine, targeted therapy is not going to work for such a weird mix. There is a new study opening soon that targets both at the same time, but if some of the cells are hiding both, that’s not going to work either. Leukemia is tricky. When I started this trial, they hadn’t seen leukemia hide CD22, so that was really promising. Now, it seems like that is possible after all, and even if CD22 isn’t completely hidden, the density is drastically decreased. Basically, the leukemia may still express some CD22, but not as much as before, making it really difficult for CAR cells or other targeted therapies like inotuzamab to find it. There have been a lot of thoughts running through my head the past few days. Shout out to Jenn for the day of spontaneous adventures for a bit of a distraction yesterday. We walked around a lake, played with puppies, hiked to a waterfall, and sat in her hammock above a stream and talked with the calming sound of water beneath us. It was exactly what I needed (besides for the leukemia to go away and stay away…). My first thought on Sunday (other than no way, please let this be a joke) was that I should have listened to the team at Hopkins and done a transplant three months ago when they suggested it. However, my dad reminded me there was no way to know, and when my doctor from NIH called later that night to check on me, she said “you are not alone.” Those words mean so much to me for so many reasons. She meant that I was not alone in wanting to avoid a second transplant if possible, and that I have three teams of doctors supporting me in my fight. But her words made me stop for a minute because there’s more to them that she wouldn’t have even known about. This term, I edited a booklet for Cool Kids Campaign as one of my projects. Its title? You Are Not Alone. Patients and families contributed stories and advice for dealing with a new diagnosis and it will be sent to hospitals around the country for newly diagnosed families. Editing it was the most fun I’ve had for a school project in a while, and I learned more than I expected to. There were definitely some hospital survival tips in there that I was hoping to never need again, but now can put to good use. Anyway, this phrase wasn’t just about the booklet and my doctors. It was about you guys. Everyone who reads these updates, everyone who texts and visits, everyone who supports my parents and siblings, everyone who joined the bone marrow registry or donates blood, everyone who sends positive thoughts and prayers, everyone who wears their Karen’s Crusaders shirts. I love you all more than words can describe, and you are so motivating.
Besides the whole wanting to avoid a transplant thing, I’ve done a lot in the past few months that helps keep me confident in my choice. I have been going to physical therapy twice a week with an awesome therapist who pushed me and encouraged me to do my best and continue increasing my weights. My knees feel so much better, they can straighten, and I’m that much stronger going into the stress of a second transplant. I’ve made new friends, had an amazing weekend at Sibs, and had lots of other great experiences I would have otherwise missed. Words can’t describe the disappointment of no longer having my summer full of concerts and vacations (mixed in with classes of course), plus the 30th anniversary of Camp Sunrise, but I know I’m strong enough to beat this. When you’re the only person in the world who has this exact treatment history, the plan forward takes a little while longer to come together. When people are initially diagnosed, it’s a “go to the emergency room immediately” kind of thing, whereas now it’s more like “when can you come in to discuss things and have all these tests?” I certainly want to get things moving quickly, but I also have concert tickets for this weekend and I’m going, even if that’s the last fun and normal thing I do before I’m inpatient for a while. It’s a balance. Of course I want to be healthy, but I need a few more days to mentally prepare, not a line placement on Friday. I have appointments tomorrow and Thursday, then I’ll be in Philly from Friday until Monday to sort some stuff out and see my friends. I’ve been worrying about everything except those pesky leukemia cells. I’ve been trying to get all the information I need to decide whether or not to continue some of my classes this summer. I worried about Gamma Sig office hours and the schedule for camp with my activity now up in the air. I’ve thought about how much I’m going to miss Clyde. I’ve tried to cram as much time with friends in between my appointments as possible. I haven’t really faced the idea of spending my entire summer inpatient. I’ve thought about the stuff I’ll be missing, but I try not to think about all the time I’ll have in the hospital and away from home. Being away because I’m in my second home in Philly is fine, but I don’t think my head will totally accept reality until I’m sitting in the hospital. With each diagnosis come fewer and fewer remaining treatment options, and I don’t like to think about that. Running out of options is not an option. The next week and a half involve lots of appointments and repeating the tests I had last week to confirm the diagnosis and check my organ function. I’m hoping to avoid another spinal tap because I have had a headache of some sort since my last one but I will definitely have another bone marrow aspirate, ECHO, EKG, a kidney test, and lots of labs. And I thought a spinal headache was a bad way to spend break – if only I knew! They want to put a Hickman in, but I’m resisting that until we have more of a plan. Unlike a port, Hickmans come out of the skin, need to be flushed twice a day, I couldn’t swim with it, and showering is a huge pain. I am happy to get stuck in the arm for labs until I absolutely need the line. Many of you have probably noticed over the years that my post titles are frequently quotes or lyrics, and this post is no exception. There’s a song called When I’m Gone that came out in the fall, right around my last relapse. It wasn’t played a lot on the radio, but I looked it up the first time I heard it. It’s about living a life without regret and one that will live on when you’re gone. That probably makes it sound really depressing, but I never interpreted it that way. I always thought it was very realistic – he isn’t going to live forever, and he wants to make the most of all the time he is given. Anyway, I love the song and I think I generally do a good job living it, but there is one line that’s been bothering me for the last few months: “Tell them I stared down all my fears.” I avoided my fears for the last few months, but now with a second transplant and hopefully enough GvHD to get rid of the cancer for good, I can truly say I am facing my fears. These bad news updates don’t get easier to write and they don’t get easier to deal with. They just get more routine, in the sense that I know exactly who I need to email to sort out various issues. They can’t be any more fun to read than they are to write. Thanks for sticking with me through all of this. One thing I learned in my public health class is that when you have bad news, you have to give people actions to take. I can’t think of anything I need right now, so if you want to help, go donate blood and platelets, join the bone marrow registry, and hug your friends and family. Text me tomorrow morning during my four hour kidney function test. Philly friends, I’d love to see you this weekend and please keep in touch! Maryland friends, the next week is really busy but I’ll probably be in the state all summer now. Love you all and thank you so much for your continued love and support! 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 :) |
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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