I can’t believe we’ve already been in Philadelphia for a week! The beginning of the week was a bit of a roller coaster but the past few days have been much better and tomorrow is the big day! On Monday, we got up really early and drove up to CHOP. We left a little later than we had intended and got stuck in some traffic so we were a little late for our appointment but nobody missed us. Someone had called out, and we sat there for over an hour before they even did vitals. We waited a while longer and then a nurse came to get me to access my port. My port is in an unusual spot in my chest for someone my age, but the surgeon used the scar from my port from my first treatment so I’m really happy with it. It works great and nobody has ever had trouble accessing it – until this nurse. She tried both size needles multiple times and couldn’t get it to work. I’ve never cried during a port access, I can usually barely feel it, but when I get stabbed probably 8 times in the same spot, it starts to really hurt. Plus when I don’t get enough sleep, I cry really easily, so that certainly wasn’t helping. I had been planning to have them take the needle out and re-access me each day, but after that terrible experience, I left the needle in all week and only had them take it out on Thursday when I was finished with chemo. I got two chemos on Monday: fludarabine, which I’ve never had before, and cyclophosphamide. The cyclophosphamide requires an hour of fluids before, and for my size that meant about a bag and a half. After the machine beeped because the first bag was almost empty, the same nurse restarted the machine…without switching over to the second bag. Within minutes the line was full of air, which the pumps luckily notice so it didn’t go into my bloodstream. We were not impressed. I hope she was just having an off day or something, but we were happy to have other (wonderful) nurses the rest of the week! The clinic set-up here is much different than what we are used to at Hopkins. One side of the floor is for bloodwork and talking to the doctors. If you need chemo, you move across to what they call the day hospital, which has 4 open bays with four chairs each, and a few isolation rooms. Each patient has a reclining chair, two chairs for parents, and a tv. On Monday, we were in bay C. Being in the middle was really loud, and the chairs weren’t as comfortable as the beds at Hopkins that are in the rooms (at least not for napping). Trying to catch up on sleep was not happening. After the hour of fluids, I got my two chemos and then I needed three more hours of fluid. By the time we were getting ready to leave, I noticed my knees were really painfully stiff. They had been stiff to the point where it hurt to walk one night last week, so I assumed that ice would help again. I put ice on them and the doctors gave me half a dose of oxycodone but we said we didn’t need a prescription for it because I thought they’d be fine. By the time we got back to our hotel I could walk again, no problem. We went out to get Chinese takeout for dinner and stopped at a grocery store on the way to pick up a few things (it was the weirdest store we have ever been in, but we got what we needed) and I had no trouble walking around. Our hotel is nice – it’s designed for long-term stays so we have a full kitchen, with an oven, full size fridge, dishes and even a dishwasher. We have two bedrooms, each with their own bathroom. There is breakfast in the lobby every day and dinner Monday-Thursday though we’ve only gone to dinner once. The only downside is that we are on the second floor and there are no elevators. In general, doing stairs is good for me and my attempt to rebuild some muscle but there were days that I’m using the railing to pull myself up them because my knees hurt so much. We went to sleep at 9 on Monday because it had been such a long day. Less than two hours later, I woke up because the oxycodone had worn off and my knees were once again in pain, probably some of the worst pain I’ve had in my entire life. I spent the whole night with ice on them listening to relaxing music and taking deep breaths but nothing could mask the pain enough for me to go back to sleep. It was a long night. My mom kept me company for some of it which was nice, but she needed to sleep too. On Tuesday morning, my mom went to the lobby to get breakfast. She tried to bring me a waffle because there was absolutely no way I could walk over there to get it myself but the lady at the front desk told her she wasn’t allowed to take any of the food out of the lobby. As it turns out, there was a back door she probably could have snuck it out, but instead she had to throw away my waffle and I ate cereal we brought with us with the just enough milk to moisten it but not so much that I could taste the milk (it’s still all chemicals to me). Our goal was to get to CHOP as early as possible so that I could get another dose of oxycodone. We avoided the highway traffic by taking a back way…and got stuck behind a trolley. For those of you who aren’t familiar with Philadelphia public transportation, there are two subway lines and lots of buses and trolleys, which stop at almost every block, or so it seemed. It was a slow ride, but luckily we could just go right to the day hospital, where they quickly ordered me some more oxycodone (and gave us a prescription so it wouldn’t wear off again). We got to choose our spot and chose bay A, which was much quieter than C. One of the people checking on me and doing vitals was a Drexel co-op student! Tuesday was a repeat of Monday in terms of the fluids and the two chemos. Phillip biked down before work and brought me some great magazines for hospital entertainment, plus we played Uno until it was time to leave. It was really nice to have a distraction, and I’m thankful that I know people here that can pop in and visit. I can’t imagine if I had gone out west for this treatment or something. Speaking of visitors, I’ve finally met some of the child life specialists and the doctor running the study I’m in even came by to say hello because someone at LLS told him to check on me. It was nice to put a face to the name on all the papers, and he was a really nice guy! On Wednesday, I slept in a bit because I could finally sleep since the oxycodone controlled my pain. I woke up every few hours thinking it was morning because my body was so excited about even 2 hours of sleep that I thought it must be morning. We chose Bay A in the day hospital again and I only needed the fludarabine, which took half an hour. At Hopkins, the pharmacy won’t start mixing chemo until the patient arrives. At CHOP, unless it’s a really expensive chemo or one that has to be given immediately after mixing, they have it ready for you when you get there which is AMAZING. I had another ECHO (heart test) after my chemo and we were still back to the hotel in time for lunch! Thursday was even shorter – I needed the half hour infusion and that was it! Again, we were back by lunch time! I had been planning to go to The Triangle that night for production night but I didn’t think I could walk all the way to the office. I also wasn’t sure I’d be able to stay awake through the oxycodone, and the idea of sleeping on the couch in the office in front of a bunch of strangers (after being gone for a year there are a lot of people I don’t know) wasn’t really appealing to me. Luckily, Triangle people are awesome and two of them came to visit me instead! It was so nice to see them! What was causing the crazy knee pain? At the worst point, it wasn’t just in my knees, but also in my elbows, ankles and other joints. The knees are the most noticeable though because barely being able to walk made a lot of things difficult. The toilet in my bathroom here is pretty low and lowering myself to it and getting back up was a huge struggle. Anyway, remember how excited I was to stop the steroids? As it turns out, stopping steroids suddenly can cause withdrawal. The top symptoms? Joint pain and weakness! I’ve never had these problems before and apparently most kids don’t get them but somehow I got lucky… Every day got better though, and I could go longer and longer between doses of oxycodone. By Thursday, I could walk without being completely miserable. I had a wheelchair from clinic to the parking garage but then I walked to the car. Now that it doesn’t hurt as much to walk, I can walk more which helps keep my knees from getting stiff. I finally transitioned from oxycodone to Tylenol yesterday, which helps with the stiffness without making me sleepy. I expect the stiffness to go away over the next few weeks, along with the numbness in my hands and feet, because those are all Vincristine side effects and my last dose of that was September 1st. Today my hands and feet have been feeling kind of tingly instead of just numb so I’m hoping that is a sign that the feeling is coming back. On Friday, I had the day off from CHOP. I had a meeting with my co-op advisor in the morning which was extremely helpful and then I got to spend the afternoon with Phillip. On Saturday, some of our old neighbors came to visit – and brought the t-shirts! There were so many that they came in two boxes and they look awesome! I can’t wait for everyone to get them! We went out to lunch which was delicious (and the leftovers were delicious for dinner!) and I had time for a nap before some other neighbors stopped by before they went to a concert. They brought us some games from home because we’ve already played a lot of Rummikub and Uno. Most people don’t go to a different state to hang out with their neighbors, but whatever works! In addition to games, I’ve been filling my time with naps. We also have been able to FaceTime with everyone at home every night so far which has been really nice. On Sunday morning, I noticed my appetite had pretty much disappeared. I went from the steroid hungry all the time to the post-chemo I want nothing to do with food. My aunt and cousin came to visit which was a lot of fun. We went out to lunch at a really good barbeque place but by the time we got there I was ready for a nap and I always have trouble eating when I’m tired. I ate as much as I could and took a nap as soon as we got back. My mom enjoys when other people are here encouraging me to eat because I don’t make faces at them like I do at her. Today I went back to CHOP for bloodwork. Once again, today’s nurse (a different one) had trouble accessing my port. I really have no idea what the problem is here, but luckily I only needed labs so they didn’t have to keep stabbing my chest. One stick in my arm and I was done. I didn’t need any transfusions so it was a pretty quick appointment. My ECHO from last week looked good - everything continues to improve after the septic shock. When we got back to the hotel, my mom emailed my nurses at Hopkins for port accessing advice because tomorrow they’re going to need to get it so they can give me my cells, and everyone will be happier if it doesn’t take many tries. I have an EKG in the morning and then I get my cells in the day hospital. Some people get a fever during the infusion, in which case I’d be admitted right away. Others get a fever within the next few days, so I’d go back to the hotel and we would go to clinic or the ER depending on the time of day that I get the fever. The oncology department here has very strange fever rules compared to Hopkins. At home, if I get a fever of 100.4, I go to the emergency room and I’m automatically admitted for at least two days. Here, you call when you have a fever of 100.4 three times in 24 hours, taken at least two hours apart. You call right away with a fever of 101.2 or higher. The fever I get from the cells will probably be way higher than 101.2, so I’ll still be going right away but it’s interesting how different hospitals work. One other difference we’ve noticed is with the food rules, which I’m not sure they have here. Lunchmeat is a big no for oncology patients at Hopkins, but on the day hospital side at CHOP, they have bagged lunches in the fridge – ham and cheese, turkey, or PB&J, along with a fruit and a bag of chips. We were very surprised. Also, if you’re getting chemo multiple days in a row like I was, you don’t see the doctors every day so you don’t make an appointment. We just walked in at whatever time we wanted, which was usually really early so we could get out as early as possible. One perk of being in a more open setting (the four bays) was that the mom next to us told us that her daughter just got the same t-cell therapy that I’m about to get. We didn’t talk for very long but it was nice to see someone else who did the same thing. For that girl, the really high fever only lasted two days, and she avoided the PICU by drinking a ton of water to keep her blood pressure up to make up for all the fluids she was sweating off from the fever. My blood pressure normally runs low to begin with so I’m not sure if that trick will work for me but I’ll try it! The mom said they knew another patient who was only in the PICU for two or three days. Everyone is different, but it was nice to hear from another patient. Drexel’s classes started today, which means I spent my afternoon doing as much of my work as possible. I’m almost finished with the first two weeks of one of my classes, and my goal is to do the first two weeks of my other class tomorrow (or at least as much as I can). I emailed my professors to let them know the situation and I’m hoping everything will work out that I can stay in both of these classes even with this treatment. I would hate for two or three tough weeks in the hospital to make me withdraw because I know I’d be really bored for the other 7 weeks of the term. I’m not sure when my next update will be because it all depends how I’m feeling. If you go back a few updates and read all the potential side effects of this treatment, you’ll be reminded that the next two weeks aren’t going to be easy. If you contact me, please don’t be offended if I don’t respond or take a while – I’m probably not feeling well. I love visitors, but there will be days I probably don’t want to see anyone so text me before you come! I actually don’t know where the inpatient unit is in the hospital yet, so I can’t even give you directions. Anyway, thank you so much for all your love and support both here in Philly and for the rest of my family at home! Also thank you to everyone who has sent their t-shirt money already! I’ve had quite a few people contact me about extra t-shirts but all the extras from this order have already been claimed so I’m starting a second order. Let me know if you want one/what size! That’s about all I’ve got for tonight! Keep the thoughts and prayers coming that these cells are the answer! Third time’s the charm, right?
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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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