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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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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