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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It’s been a little over a week since I headed home from Hopkins after my septic shock scare and I’m certainly not as strong as I was before but every day is a little better. I’ve been working every day to rebuild my strength – it’s crazy how fast it disappears when you can’t get out of bed for a few days. I have some resistance band exercises for my arms and I walk laps in my house or out to the mailbox. When I first got home, making it up the two steps into the house was impossible without help but now I don’t have any problem. I still haven’t tried to do a whole flight of stairs or anything, but I made it to the top of the bleachers at both of my brother’s soccer games! We also borrowed a stand from our neighbors that turns a normal bike into a stationary bike, so I’ve been using that occasionally. It makes my knees stiff, I think because of one of my medicines, and the longest I’ve stayed on is 9 minutes but everything is progress. I’ve managed to stay pretty busy despite my limited strength and energy. Last weekend, my boyfriend came to visit which was really nice even though it seemed like I slept for half the weekend. On Saturday night, we went to the Ken Singleton Celebrity Golf Gala to benefit Cool Kids Campaign with my parents. It was so incredibly refreshing to get dressed up and go out and do something I’d been looking forward to for months. I was rather unsteady at that point because I was still getting used to walking with numb feet (and hey, a week prior I had still been in the PICU!) so I spent most of my time sitting but I did get to look at all of the auction items and talk to everyone from the office that I’ve missed so much these past few weeks! The food was absolutely amazing (and so is Phillip for giving me his crabcake in addition to my own), and we all had a great night. On Sunday, the weather was gorgeous so we went to a park for a very slow walk. I took quite a few breaks but it was wonderful to be outside. We had to start my antibiotic ball in the parking lot because we were still at the park when it was time for my afternoon dose. It’s always an adventure! Tuesday night was my last dose, so I finally got the needle out of my chest – yay! This week, I’ve had a few visitors, who always make my day so much better, but I’ve also been able to get out of the house which has been nice. I went to the grocery store with my mom and only sat down to rest twice. We went to our neighbors’ house for dinner one night, I made monkey bread with one of my friends who came home this weekend, and I went to quite a few soccer games. By the time I get home, the season will be over so it was nice to be able to go to a few before I leave. Yesterday, I went to Susie’s game, only to arrive and realize the fields were quite a hike from the parking lot. I made it down the big hill to the field with no problems but my dad drove down to pick me up at the end. I wanted to see how far I could make it up the hill, but it had poured for a lot of the game (don’t worry, I had two jackets and an umbrella so I stayed warm and dry) and my flip-flops were covered in grass and mud and they just wouldn’t stay on my feet. It was frustrating, but I had to remind myself that a week ago I wouldn’t have even been able to walk down to the field without a rest. I also felt much better after a delicious pork barbeque sandwich from a firehouse fundraiser that we passed on the way home! I just realized I’ve unintentionally been mentioning a lot of food, but I’ve got the steroids to thank for that. In the fall, I only took a week at a time so they didn’t have time to build up too much, but a month straight has brought on the chipmunk cheek look and a lot more snacking – garden salsa sun chips have been my food of choice because they’re flavorful even to my dulled taste buds. It seems like all the food just goes to my cheeks though, because all of my clothes are still really baggy after losing so much muscle. It’s not a lack of food though – I went to Chipotle with one of my friends the other day and ate my whole burrito quite easily. Some of you may be thinking “What? You went to Chipotle? Isn’t that germy and against the rules since the food sits out?” I had always assumed that yes, I should avoid places like that, but I overheard one of the doctors telling another patient the other day how the stuff barely sits out for 5 minutes if you go at certain times so it’s actually not a bad choice. Sure enough, they put a fresh bucket of chicken out right before they scooped mine. I didn’t get any lettuce since bagged lettuce is on the list of things to avoid, and I brought my own drink to avoid the dispensers. We ate outside because it was a gorgeous day, and it kept us away from the crowd. Anyway, tonight was my last dose of steroids and I’m so happy! They cause insomnia, which has been much worse some nights than others so I apologize if I woke anyone with my random 4am responses to texts/emails, photo liking sprees and game notifications. Fortunately, the steroids haven’t made me ravenous in the middle of the night like they did when I was little, but I think they have made me more emotional, or maybe I’m just nervous about heading to CHOP. I went to clinic on Monday morning for a spinal tap and my final dose of Vincristine. Everyone was so happy to see me out of the PICU and back outpatient! If you remember from my last post, Vincristine is what has been causing numbness in my hands and feet (neuropathy). I can’t feel the difference between wearing socks or not, or wearing flip-flops or sneakers. I can tell if my mom touches my foot, but I can’t tell if she just tapped it or pinched it. It takes a really long time to register if I touch something hot, and a lot of everyday tasks are significantly harder when I can’t tell how hard I’m gripping something. I’m learning to deal with it though, and the doctors decided not to give me the last dose. Generally, they like to keep induction chemo as intense as possible, but at this point I’m more of a risk to myself if I lose more feeling and I was a unique case because they weren’t counting on this chemo as a cure – it’s a bridge to the t-cells. Considering it takes a few weeks to regain full feeling, I’m quite thankful that they skipped this last dose because that means regaining feeling a week earlier, and not losing any more! Still no sign of feeling yet, but I never got any jaw pain. My joints have been stiff, but not so bad that I can’t walk. You win some, you lose some. My spinal tap went smoothly and I slept most of Monday afternoon. I had expected to go back to clinic sometime this week to check on my counts but everything looked good on Monday so I didn’t need to go back. It was weird that I didn’t get to say goodbye to everyone because I was asleep from the versed for my spinal tap but I’ll be back in 4-6 weeks! Tomorrow marks the beginning of our stay in Philadelphia. My mom and I will be leaving crazy early in the morning because my appointment is at 8:30am. I get four days of outpatient chemo – cyclophosphamide and fludarabine on Monday and Tuesday, and just fludarabine on Wednesday and Thursday. I’ve never had fludarabine before so I’m not sure what to expect. Getting chemo before I get my t-cells back helps reduce the amount of disease the cells will be attacking, which reduces the stress on my organs from all the dying cells. The chemo also kills my healthy cells, which makes room for the t-cells to come in, divide, and do their job. That’s what I remember from meeting with the doctors a while back – there’s probably more that I’m forgetting but you get the idea. As far as I know, I’m free from the hospital for the weekend until Tuesday the 23rd, when I get my cells and the waiting game begins for the fever and flu-like symptoms. They expect blood pressure issues at some point which would send me to the PICU, but these issues would be a result of the new cells rather than an infection. Drexel’s classes start the day before I get my t-cells infused. If you remember a few updates ago when I explained all the potential side effects, you can see where this is a bit of an issue. I have decided to try to take two classes anyway, though I can always change that plan. I’m taking classes with professors I already know, so I’m hoping they’re willing to be flexible for the first two or three weeks because I know I’ll be so bored later this fall without any classes. Everyone at Drexel has been very helpful this term, and getting everything sorted out was much easier than last fall term which was a relief! I didn’t start packing until after 9pm tonight (though I had made a list earlier!) which was a little later than I intended. It went more smoothly than I expected, until I accidentally packed my phone somewhere and had to unpack all my bags to find it. Oops! It was a lot different to pack for CHOP rather than Hopkins. My parents aren’t switching places as often so I had to be more thorough, and we don’t really know what to expect in terms of hospital food options. I also had to consider what I wanted to do in all my free time this week. I’m looking forward to seeing some people from Drexel and hopefully stopping by my first production night in over a year, but my friends are technically on break right now so a lot of people are away. People have been asking about visiting rules, but I’m not really sure about those yet. I’d love to see as many people as possible before I get my cells but my energy level is a bit limiting. Once I’m inpatient, I’ll have a better idea about the rules for visiting there. As long as you’re not sick, you should be fine, but there may be certain visiting hours. I’ll keep everyone posted. That’s about it from me! After two really long updates in a row, it was nice to write a shorter, relatively boring (because boring is better when it comes to medical updates) post. Thank you to everyone for the continued thoughts and prayers and positive vibes as I begin this next stage of treatment. Thank you for the dinners, the games, the insane number of t-shirt orders, and everything else you all have done for my family. It’s going to be a big adjustment to have two of us in Philadelphia for weeks (my poor siblings had to learn how to do laundry) and we really appreciate everyone who is helping to make it easier! As always, I love you guys and I’ll post later this week to let you know how things are going! I know a lot of my updates are really long, and my last update was really long but I’m giving you all a heads up right now: this might be my longest update yet! You’re welcome, my procrastinating friends! My last update was posted about two weeks ago when I was still inpatient for my chemo after heading to CHOP for the pre-study tests. I had started outlining an update last Monday (August 25th) because I had some pretty exciting news to share, but on Tuesday afternoon I found myself in two ambulances and intensive care so it’s taken me a bit to catch up! I ended my last update with information about the t-shirts that my boyfriend and friends designed and before I forget I want to share the latest update: Thanks to a good family friend, the shirts are $9 each now! We changed the ribbon on the back from white to orange (the leukemia color) and even though these proofs show it on a white background it will still be a purple shirt like the original that I posted in my last update. I’m only planning to place one order because of the bulk discount, so if you’d like one please send me your size ASAP. I’ll send out a confirmation message to everyone who has already sent me their size to make sure I have them right and explain how to pay. Thank you all so much for being patient, I know a lot of you told Phillip your size over a month ago… I finally got to go home on Tuesday (August 19) after shooting at a moving target that changed shape every day. On Sunday, when I posted my last update, they were concerned about my potassium level, which had increased slightly but was nowhere near dangerous or even the high end of the normal range. When the attending told me that they were keeping me there to keep an eye on the potassium so it didn’t stop my heart, I resisted the urge to tell him I thought that was a bit dramatic since I would have been coming to clinic the next day for labs anyway. On Monday morning, nobody mentioned my potassium level, but they were concerned about the few blasts circulating in my blood. That generally means there’s so much disease in my bone marrow that it finally spills out so they were worried about the tumor lysis/all the cells dying off. Also, instead of the Monday night or Tuesday morning estimate that I’d been hearing all weekend, they told me Friday. Seemed like a big jump with very little explanation. I asked what I could possibly do to leave earlier and they told me I had to drink a lot of fluids. I was receiving 200cc/hour through my IV, which is double my baseline hydration so I wasn’t particularly thirsty but I took their challenge and had finished a liter 2 hours later. I found the doctors, told them I’d met their morning goal and they turned my fluids down to my baseline of 100. Before the day was up, I’d had more than 4 liters of fluid, in addition to what they were pumping into me. My blasts were also gone by that afternoon so I was feeling confident that I might actually leave the next day. When we got my early morning results, my potassium was up a tiny bit and I had a few blasts again. My mom thought there was no way they’d let me leave but they came in and told me I had to drink 3 liters a day at home and I could leave. What? Apparently I should have asked for a fluid goal earlier. We were incredibly frustrated but thankful to be leaving. I worked hard drinking three liters a day but the chemo side effects started to hit me through the week. I went to Cool Kids one day with Susie (she decided she’d rather hang out and help me than go with my mom and brother to appointments – can you imagine?) and even though I only made it half a day before I decided I should really go home before I was too tired to drive, it was nice to do something normal. I got to see a bunch of my friends that week before they headed back to school, and we even went peach picking one day! The next day when I was in clinic for chemo, my nurse couldn’t believe I’d been climbing a tree the day before. That’s what all cancer patients do, right? I spent both Friday and Monday in clinic for chemo. Monday (the 25th) was the last day I was allowed to receive the most intense chemo drugs because I have to stop them 4 weeks before I head to CHOP…All of the tests I had in Philly back in mid-August showed that I qualify for the Novartis study so my cells are officially in manufacturing! I don’t have to wait until late winter! The week of chemo before I get my t-cells starts the week of the 15th (wow that is really close now!) and I will get my modified t-cells on September 22nd! Between now and then, I’m only allowed to get certain other chemos that are more maintenance-type drugs to keep my leukemia level low without knocking my counts too low. For example, I’ve continued the prednisone (steroid) and weekly vincristine. These are two of my least favorite drugs so I was a little disappointed that they’re on the approved-within-a-month-of-the-study list but oh well. I took both during my maintenance therapy (the two years of low-dose chemo to make sure everything was gone) when I was younger. The prednisone causes insomnia once I take it for more than a week or two and when I was younger it made me extremely hungry – I couldn’t make it through the night without waking up and demanding food. So far, I haven’t been starving this time but the insomnia has definitely set in some nights, which is tough when the rest of my body is exhausted from the chemo and just wants to rest! The vincristine side effects build up the more you get, so each weekly dose has brought on a new side effect. During my first treatment, I got really bad jaw pain that only Oxycodone would help relieve. I’d miss a week of school at a time simply because I couldn’t stay awake from the pain meds. I noticed my jaw felt funny after my first dose during this re-induction phase so I expected it to be bad after my subsequent doses. I asked if there was anything other than narcotics to help with the pain and they gave me a medicine specifically for nerve pain, which is what the jaw pain actually is. It takes a little bit to build up and start working, so my doctor suggested I take one dose the Friday I got my vincristine instead of waiting until I actually had bad pain. I had gotten platelets in clinic as well, which they gave me Benadryl with to prevent an allergic reaction. I’m so sensitive to anything that makes me sleepy and with the constant craziness that is clinic, I never really got to sleep the Benadryl off. I was still sleepy when I got home and took the new medicine before I went to bed. When I woke up in the middle of the night, I thought I had permanent brain damage or something. I was stumbling to the bathroom, couldn’t think or walk straight, and it was absolutely terrifying! My parents took my sister to a soccer tournament Saturday morning and almost came home when they called to see how I was feeling and my brother told them I had been asleep for more than 12 hours. Once I got up and ate a little food, I felt somewhat better but I knew there was no way I was taking any more of that medicine, no matter how much anything hurts in the future! My jaw is still feeling decent, but my hands and feet are constantly tingly from the vincristine. I don’t remember having that side effect before but maybe the jaw pain used to distract me from it. I can’t grip things very well and it’s hard to distinguish between different textures and tell how hot things are but I’m sure it’ll go away sometime next week since I get my last dose of vincristine this upcoming Monday! I’m sure this update is getting very confusing with all of the dates, but I’m doing my best to make sense! Basically, I head to CHOP really soon which is exciting but nerve-wracking because of all the crazy potential side effects I described in my last update. Apparently I was really nervous about being in the PICU (Pediatric Intensive Care Unit) at CHOP because I decided to give the PICU a trial run at Hopkins last week. Last Tuesday (I’m up to August 26th here), I was feeling fine in the morning. One of my best friends came over to visit before she left for school and even though I was tired from the chemo the day before and the steroid insomnia, I felt pretty decent. After lunch, I tried to take a nap and started feeling nauseous. I threw up and had some diarrhea but nothing unheard of with chemo. I threw up more around 6pm and I knew I was dehydrated but couldn’t keep any fluids down. I didn’t have a fever but my mom still called the doctors to see if we should do anything and after not too long I told her to call an ambulance, now. I was so dizzy I knew I couldn’t make it to the car to drive to the Emergency Room ourselves. I know I was terrified but other than that a lot of that night is a blur. I know my mom was shocked that I demanded an ambulance since I’d been feeling fine earlier in the day but she knew that I wouldn’t just say something like that unless I actually needed it. I know my body and I knew something was not right – and it turns out that call probably saved my life because of the time it would’ve taken us to actually be seen if we had gone to the ER ourselves. By the time the paramedics arrived, they couldn’t read my blood pressure because it was so low. My dad came in the ambulance with me and the lowest number he remembers hearing that day was 58/21. My highest heart rate was in the upper 170s. I normally have a pretty low blood pressure, but that is clearly that was nowhere close to normal. My doctors told me later that they were impressed that my body managed to stay conscious the entire time. I was so tired and dizzy that I tried to let my dad answer as many questions as possible but if they directly addressed me I could always respond. I had my port accessed because I was on an IV anti-fungal medicine at home so they had an easy way to start giving me fluids, and my mom talked to the doctors at Hopkins who helped coordinate the plan with the Howard County hospital emergency team. My parents asked if the ambulance could take me right to Hopkins but they decided I wasn’t stable enough for that long of a ride so I spent a few hours at HCGH. They eventually ambulanced me and my dad to Hopkins (they almost flew me by helicopter but luckily I was stable enough for an ambulance) after at least 5 liters of fluids plus antibiotics and who knows what else. I was taken directly to the PICU at Hopkins, where I received more fluids, blood, platelets, plasma, multiple blood pressure medicines, lots of antibiotics, and who knows what else to try to get me stable. They placed multiple IVs, but most of them failed after a day because the blood pressure medicines made my veins difficult. As I type this more than a week later, my arms and feet are still covered in bruises from all the attempts. They placed an arterial line in my foot (this took 3 people each multiple tries before they got one that worked) which allowed them to constantly monitor my blood pressure and do bloodwork and they also placed a line in my neck with three lumens, each of which had multiple things connected to it. My mom described it as a tree sticking out of my neck because everything just kept branching off. I was mostly awake for the line placement because they didn’t want to give me much Versed, which could drop my blood pressure. At one point I had 14 pumps for medicines, plus I was on high-flow oxygen, though they reduced that a little each day until I could finally switch to a smaller oxygen tube instead of the one that made me look like a dragon or some other monster (I refused to Facetime with Susie until the big oxygen tube was gone, it was just too much). All of the fluids they were pumping into me weren’t just in my veins anymore – they were everywhere. Everything about me was puffy and I was carrying almost 20 extra pounds of water weight. The blood pressure medicines apparently draw blood flow away from the intestines so I wasn’t allowed to eat or drink because they were worried I couldn’t digest anything. I was used to drinking 3 liters of water a day at home and my mouth was so dry! They offered me these wet sponge swab things but wouldn’t let me even swish water and spit it out for days, no matter how much I begged. My pressures were stable enough by Thursday to wean me off most of the blood pressure medications, though they didn’t completely stop until Friday because they had to switch some of the medications around a little after a concerning heart test. The doctors heard a gallop in my heartbeat so they did an echocardiogram which showed significant decrease in my left ventricular squeezing ability from my last ECHO earlier in the summer. They switched one of the blood pressure meds to one that can help the squeeze function. One of the chemos that I’ve gotten can cause this issue, but I haven’t gotten nearly enough of it to be at the threshold where they usually get concerned. They suspect the issue was due to the huge amount of bacteria in my bloodstream and they’re repeating the test tomorrow to make sure that it’s gotten better. The doctors no longer hear the gallop and expect that the test will show improvement which is good because we have a feeling that CHOP wouldn’t be very happy with me coming into their study with a weak heart. The PICU is a scary place and the rules are a lot different than the oncology floor. First of all, the lights aren’t allowed to be off. Once I was more stable, they dimmed them but the first night, the lights were on. I like quiet and darkness to sleep but that was not happening. Most nurses also only have one patient, so they barely have to leave the room. This worked out well since I needed almost constant attention to keep up with all the meds, but it was weird having no privacy whatsoever. Instead of three or four doctors doing rounds, there was a huge crowd that combined PICU doctors and the oncology team, and instead of coming into the room they would gather outside in the hallway and talk loudly enough for me to hear. The rooms are only sort of rooms – they have sliding doors and curtains which were fine once they were allowed to close the door but the first night was very loud because everything had to stay open. My parents weren’t allowed to keep food or drinks in the room, and visiting hours were pretty strict (not that I was up for visitors). Susie would have needed pre-approval to visit because she’s so young. Most of my visitors while I was in the PICU were hospital staff from the oncology floor. A lot of my clinic nurses and doctors came down, and even some of my inpatient nurses. Even though I was too tired to talk much, it was so nice to see everyone and know that they were thinking of me. So what was this big infection that sent me to intensive care? During transplant, I had to stay close to the hospital because of the possibility of getting very sick very fast, and of course we knew that was a possibility now thanks to the re-induction chemo but it definitely isn’t as well emphasized. Anyway, everyone has bacteria in their gut – that’s good and healthy. The only problem is, chemo reduces the lining of the stomach which makes it really easy for these bacteria to get into the bloodstream. The cultures from the hospital showed that I was growing gram-negative rods, probably e. coli from my intestines. It wasn’t anything we could have expected or prevented; it’s not like I ate bad food or was exposed to too many germs from my siblings being at school. The bacteria got into my bloodstream and since my ANC was at 0, I had absolutely no way to fight it and this sent me into septic shock. I’m certainly glad I didn’t know anything about septic shock while it was happening because it is extremely dangerous and can cause organ failure and even death if not responded to quickly. Like I said earlier, calling the ambulance when we did very well could have saved my life. It never occurred to me, even though I felt terrible at the time, how sick I really was. My body continues to amaze me. Even though my bone marrow might be having some trouble, the rest of my organs continue to support me and help me pull through even the craziest situations. A family friend posted something that caught my eye the other day. I don’t remember the exact wording, but basically it said that any day you wake up and are still alive, there’s a plan for your life whether you can see it or not. It’s been a tough week of recovery but I’ve never been more thankful for my body, my family, my friends, everyone who took care of me at Hopkins, and everyone in my life constantly sending thoughts and prayers my way whether they know me personally or not. We all have our imperfections, but there is ALWAYS something to be thankful for. Many of you reading this may be aware that September is Childhood Cancer Awareness Month but a lot of you probably had no idea until now. When I was sitting in the hospital thinking about writing this update, I was planning to leave a lot of details out because some of them are much more personal than I’d usually share with anyone other than my close friends, much less the internet. However, what good does that do? I keep a very positive attitude because that’s the only way to keep moving through tough times, but a lot of this just plain sucks. A friend of mine, who lost her brother earlier this summer after his tough battle with leukemia, posted on her blog the other day about him mentioning during his first treatment that he wanted his cancer story remembered, not just that he fought hard but the painful, ugly parts as well. Considering how underfunded childhood cancer research is compared to adult cancers, I’ve decided that I can risk some embarrassment and share some more personal stories even if only one person reads this and remembers any of it. I’m not looking for pity, and neither are most other oncology patients I know. They just want people to understand even a tiny bit of what they’re going through. When I was in the PICU, the nurses had to give me baths with wipes, and help me roll over so they could change my sheets while I was still in the bed. I couldn’t scoot myself up without two people to help me or lift my arms enough to adjust my pillows. My arms were so heavy from the extra fluid in my body that holding my phone long enough to send a few text messages (before my charger became a PICU casualty and my phone died) or play a hand of cards was enough effort that I needed a nap. I moved up to the oncology floor on Sunday, once my pressures had been stable for a while without any blood pressure meds. It was so much nicer to be up with my familiar nurses, fighting over me even though I wasn’t my usual self. Before the move upstairs, they took all of the lines out my neck and feet so I was only on a low amount of oxygen plus my antibiotics, supplements and other medicines which could all be given through my port. At that point, I was only able to eat a few crackers. I was wearing diapers because I didn’t have enough strength to get out of bed and make it to even a bedside commode. Yes, I’m 20 years old and I had to have my diapers changed. Quick shout out of thanks to my friends who reminded me that astronauts wear diapers too – that made them seem a little cooler (but only a little). There’s one lovely medicine called Lasix that they kept giving me to make me pee to try to get rid of some of the extra fluids. Sometimes it worked really well – so well that even when the nurses doubled up my diapers they would still overflow. As an adult, this was a tough reality check. On Monday, the doctors told us that I’d be inpatient through early next week, until my antibiotics were finished. At that point I was still extremely weak and hadn’t even thought about going home yet. My family came in on Monday night for dinner which was a great distraction. I was still very tired but it was nice to have a little normalcy. By Monday night, I was reliably using the bedside toilet, though getting up to use it was a lot of effort and I always made sure my mom was awake and standing right there in case I got dizzy or lost my balance. Luckily I didn’t have any issues, but the fluid in my lungs did make it tougher to breathe and I was coughing a lot. On Tuesday, I started using the actual bathroom! This was a huge step for me (again, embarrassing as a 20 year old who likes to be independent) but it meant I was getting a lot stronger. Every time I got up I would do a few leg kicks or stretches because movement helps move the fluid around so that it can leave my body. The discharge nurse also pointed out to the doctors that the antibiotic I need is available through home care – so they changed their plan to leaving the next day: Wednesday (yesterday)! This was a huge shock to us, and I worked hard at my physical therapy exercises and walked most of a lap around the floor so that I would be strong enough to make it to the bathroom at home. I’m so thankful that our house is all one floor other than the basement because making it up two steps into the house was a huge challenge for my weak legs. It’s amazing how much muscle I lost just from a few days of being immobile. All of the additional water weight made it even harder – I’ve lost about 15 pounds in the last three days thanks to all the Lasix making me pee and I’m still not back to my normal weight! I can see my elbows and ankles again though so it’s much better. The remaining fluid is mostly on my abdomen, but even that is much improved – a few days ago it looked like I had no belly button, I was so puffy, but it’s coming back! Being home has been so much nicer than the hospital, of course, and since I have to walk farther to the bathroom and to get things for myself, I’ve definitely been more mobile which is good for my strength. It’s still tough to be so weak and need help with so many things – making food getting anything that’s close to the ground (my legs aren’t strong enough to bend over plus the fluid in my lungs makes me cough), etc. The first few times I got up to use the bathroom, I wondered if I should have someone walking with me just to be safe. I’m so incredibly lucky to have such a supportive family, but I still wish they could use their time for their own activities instead of cleaning up after me or making sure I’m okay. Many people have asked me what I did first when I got home yesterday. Usually I’d crawl in my bed or something normal like that but honestly? I begged my mom to get rid of my hair. From the front, it still looked fine. My hair is always so thick that I can lose a lot before it’s really noticeable but I had a large bald spiral on the back of my head from rubbing against the pillows that there was no hiding. I hadn’t been able to wash it because I was too weak in the hospital and it was falling out all over the place which was incredibly itchy and depressing. With a brush and our hands, we got almost all of it out, no scissors needed. We had a few wonderful mad scientist hairdos in the process and there are a few wisps left but I’m sure they’ll be gone within the next few days. It was really frustrating to lose my hair again but I know it’ll grow back soon enough and I’m looking forward to seeing what color it is this time! Meanwhile, my head is soft and not itchy, yay! I’m on a ton of medicines; a lot are supplements for nutrients that I think I’m low on because of all the peeing I’m doing from the Lasix. Tomorrow should be the last day of that since I’m getting close enough to my starting weight so hopefully the extra pills will stop too. In addition to all the pills, I have an IV antibiotic that I get every 8 hours through Tuesday (I think) which means my port remains accessed. The medicine comes in these really cool little balls and somehow it infuses over the right amount of time, then we flush with saline and heparin to keep my line from clotting until the next dose. Pretty fancy – no pumps needed! While I was in the hospital, both my psychologist and social worker brought up the Maryland Advance Directive, which is planning for future healthcare decisions. Anyone can get sick or in an accident at any time and even though I’ve put thought into these kinds of decisions when I was perfectly healthy and turned 18 and they were legally my decisions, I never wrote them down. I am fortunate enough to be very close with my family and I know they would make good decisions if need be, but my healthcare team wanted to make sure I make my wishes known so everyone can best take care of me. The advanced directive, which the EMTs asked if I had (and I didn’t), gives me the option to decide who will make my healthcare decisions if I can’t, whether I would want my organs donated for research, how much life support I would want, etc. It’s definitely overwhelming to actually think about writing these things down, but I know it’s something I (and everyone over 18) should do, no matter their state of health. A car accident or some other event could happen at any time and it’s always good to have a plan. I told my social worker that I was going to enjoy my week at home rather than worrying about this right now, but it’s on my to-do list for next week. Fun times. I think that’s about it for now! I really am impressed if you made it through this whole update without falling asleep or getting grossed out. I hope most of my student friends are enjoying your first few weeks of classes, and for my Drexel friends, I hope your finals or last weeks of co-op are going well! Thank you, thank you, thank you for all of the texts, facebook messages, voicemails, meals for my family, thoughts and prayers and more during the past few weeks. We really couldn’t do this without you! Hug your family and be thankful for your strengths today and don’t forget to let me know your t-shirt size if you want one! I love you all! |
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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