When I wrote my last post on Thursday, I was prepared for Friday admission to Hopkins but didn’t really believe it was going to happen. Sure enough, I did not get admitted on Friday, though I definitely did not expect that I’d be writing another update from home almost a week later. On Friday, I got a call from my doctor that the drug I need (Inotuzamab) had not been shipped yet, and the company only ships Monday through Thursday. He set up labs for Saturday and we negotiated my overnight fluids so my port could be de-accessed in time for the extreme heat on Sunday. I had been planning a hospital castle cake and an alternate graduation with my friends in Maryland, but as soon as I realized I wouldn’t be admitted until at least Monday, I started making bigger plans. My graduation ceremony was at noon on Monday, so I knew that I could get back in time for a direct admission to the inpatient side if I needed to. After all of these delays, I was having trouble picturing anyone telling me that waiting a few more hours on Monday would make a big difference if I arrived on the floor at 6pm instead of noon. As one of my friends pointed out, graduation is once in a lifetime, cancer is apparently six. I know some of my team is extremely conservative, so I went with the ask for forgiveness instead of permission method and headed to Philadelphia with my friends on Sunday, car loaded with castle cake supplies. I invited a few of my Drexel friends over for castle cake, a new experience for most of them. For those of you who don’t know, castle cakes are a family birthday tradition, but I’ve expanded them for other occasions. I bake cakes in a variety of shapes and sizes and we put them together with icing and candy into a castle or whatever else. I have some extremely creative friends – instead of making a castle, we made a dragon! He was somewhat based on Drexel’s mascot, Mario, and was wearing his own graduation cap! It was really nice to have that extra time in Philly to see some of my closest friends again before I’m home for a few months. I also love when my friends from different places all get along! One of my doctors called during the cake making to tell me that he didn’t realize my graduation was on Monday and I should go and enjoy it and come to Hopkins on Tuesday instead of rushing back Monday. It was really nice to be able to enjoy the rest of my time in Philly without a strong time constraint! After the cake, I went out to dinner in Old City with my friends from home. We also went to Spruce Street Harbor Park, which was surprisingly packed for late Sunday night. It finally cooled down to a comfortable temperature and we hung out almost until it closed before heading back to my apartment for a big sleepover. On Monday morning, we finished packing up my stuff so I could move home for the summer. My friends and parents loaded the cars while I ate and got ready for graduation. I was supposed to be at the venue 90 minutes early, but that sounded unnecessary so I only went an hour early. That was plenty! All I had to do was pick up my name card and sit outside with my fellow graduates melting and chugging as much water as possible. Luckily, graduate students walked in and were seated first, so we didn’t need to stand in line in the sun as long as some people. When I graduated from high school, it was exciting, but it was never something I doubted I would do. During my freshman year, I felt the same way about college. Yes, it was more challenging than high school, but I knew I could work hard and get through it. As I adjusted to city life, I even joked (somewhat seriously though), that getting through the next five years without getting hit by a bike or a skateboard would be as big of an accomplishment as earning my degree. After I first relapsed after freshman year, and four more times since then, there were definitely times that graduation felt like something that might never happen. Although I have a few classes left to finish before I officially get my degree in December (hopefully!), it was unbelievably exciting to walk across the stage, summa cum laude, for my bachelor’s and master’s degrees! I’m so grateful for the friends, family, professors, and advisors who have supported me over the years. And of course, a special shoutout to my treatment teams for keeping me alive and Pfizer for taking so long to get me this drug that I could attend graduation! My dress and gown were damp with sweat and stuck to me, and I was too hot to focus on some of the graduation speakers, but the ones I heard were good. I had brought snacks and lots of water so I didn’t pass out or anything. Graduation was at the Mann Center, which is a covered pavilion similar to Merriweather, but without ceiling fans. There wasn’t much airflow up in the front where we were sitting, but at least we were in the shade. There was a nice reception after the ceremony, but I was too hot to eat much. I just kept drinking water. I keep track of my fluid intake, and by the end of the day I was at 4.5 liters! After graduation, we drove home and had a small cookout by the pool. It was a much-needed cool and relaxing way to end the day. I wish I had gotten to see some of my professors, because I’m sure they were quite confused when I missed the last week of their classes yet managed to make it to graduation. My Tuesday morning appointment was scheduled for 8:30am, but I was exhausted from the weekend and slept until 8:30 instead. I did my best to unpack and pack for the hospital quickly. It turns out, the packing was unnecessary because, once again, the Inotuzamab had not been shipped yet. My appointment was fairly quick, and I spent most of my waiting time hanging out with my favorite therapy dog, Grendel. My labs were stable, which continues to impress me considering we’ve been letting this leukemia sit here untreated for weeks now. In fact, the number of blasts in my blood went down from 15% to 4% which is completely puzzling. I guess that could be margin of error in the lab, but both my Saturday labs and Tuesday labs showed much lower numbers than the labs from last week. I have no idea if that means Matt’s immune system is kicking in and attacking the bad cells or if it’s a lab issue, but I’m not complaining! I’m really glad the leukemia isn’t taking over so rapidly that we need to start chemo while we wait for Inotuzamab.
Some combination of the heat, my low red count, the leukemia, my boredom after all the excitement of graduation, and one of my medications is making me more tired than usual, but otherwise, I’m still feeling pretty good. It’s difficult to make many plans when I’m really waiting day to day for a phone call or email saying whether or not I need to go to clinic. Despite multiple attempts to reach them, my doctor didn’t hear anything from Pfizer today, so we don’t think the Inotuzamab shipped yet. It usually ships overnight, so it will arrive quickly whenever it finally ships. In the meantime, here we sit! I go to clinic every other day for labs to make sure my white count isn’t rising out of control and my other counts are stable. So far, so good, but I’m anxious to get started. The last few weeks have been a lot of hurry up and wait, which isn’t fun when you know you have bad cells growing in your body. Until the drug arrives at Hopkins, each day is a firm possibility of a definite maybe admission unless my labs change drastically and we need to do something else in the meantime. This is incredibly frustrating for everyone. The other day, my doctor made a comment about being frustrated, and my mom and I laughed out loud. Yes, we’re very frustrated! Understatement of the day. However, I can imagine that it’s also quite frustrating to not be able to treat your patient due to things out of your control. We are ready to drive up to NY and get it ourselves! We were halfway there this weekend… Usually I end my posts with what’s coming up, but I really have no clue! I think tomorrow will just be a clinic visit, but maybe the Inotuzamab will magically appear and I’ll get admitted. It only ships Monday through Thursday, so if it doesn’t ship tomorrow, maybe I’m free until next week. We’ll see! Thank you so much for all of your prayers and messages over the last week. I try my best to respond to everyone, but some messages slip through the cracks and I apologize! I really do appreciate every one!
23 Comments
Most people who have been following my blog for a while know that two posts this close together are not usually a good sign. The good news is that we finally know what was causing all of my random fevers. The bad news is that it was another relapse, not a virus. I considered making this a short post, but that could not fully capture the uncertainty and rapidly changing plan I’ve been dealing with for the last week and I think that’s important. It can be hard to explain to people why it’s difficult to make plans a few days in advance, but it seems like my plan changes every few hours. I started texting a few of my friends every time the plan changes and I can tell they have a much better idea of my frustration level now. I posted my last update two Sundays ago. Although my counts had been a little low when I was last at CHOP, I hadn’t heard anything from Hopkins so I figured they weren’t too concerned. On Tuesday, I was trying to fix the SunSibs schedule before class when I got an email from my doctor. He said that if my counts were still low on Friday, they wanted to do a bone marrow aspirate, did that sound okay to me? I quickly responded and said absolutely not – I can’t show up to camp on Friday afternoon sedated. I suggested the following Wednesday instead if we needed a procedure. On Thursday, my parents came up to Drexel for the College of Arts and Sciences Honors Day. Some of my professors mentioned I was getting an award, but I had no idea what for. It turns out, I got a small scholarship (which my mom had seen on my bill and thought it was a mistake so she reported it) and I had the highest GPA of any senior in my department! I know a lot of you are wondering how I managed that with everything going on, but in some ways, I think my medical issues helped my GPA. Most people have life as a distraction from school, but for a lot of my college career, school was a distraction from life. It was something normal and predictable to focus on when everything else was crazy. Either way, I’m really proud of my ability to keep up and thankful for all the help from my advisors and professors. I went to Hopkins on Friday morning to check labs before camp and decide if we needed the bone marrow aspirate. My labs were overall stable from what they had been on CHOP, but my platelets were dropping so they scheduled the procedure for Wednesday after camp. As usual, I had an amazing time at SunSibs! It was a little rainy but definitely could’ve been worse. Matt came for the second time, so the three of us were all there together again. Our parents had the weekend to themselves and they opened the pool, because that’s what everyone does when their extra hands leave for the weekend. I love Camp Sunrise and what it does for the patients, but I think SunSibs is so important and too often overlooked. It’s so nice for these kids to have something special when their lives have been so focused on their sibling’s illness for so long. I see all the time how much my being sick affects my siblings, and I know it would be even worse if both of our parents worked or in a single-parent household. Anyway, it was really nice to have a fun, rewarding weekend before my week of bad news. I’m one of the Leadership in Training directors for Camp Sunrise this year, and we had our first training on Tuesday night. I was a bit nervous for this new role and leaving my comfort zone working on the daily newsletter, but we have a great group this year! On Wednesday morning, I headed back to clinic for my bone marrow aspirate. I was feeling pretty good about the test because I hadn’t been getting as many fevers and I realized that they started not long after a weekend camping so it was possibly a tick-borne illness. However, my attending physician came in, which made me uneasy because we generally only see him when there’s a problem. He told us that he looked at my blood from Friday and didn’t like what he saw. He thought it looked like there were leukemic blasts in my blood, even though the lab hadn’t said so. We were holding on to the idea that he might be wrong until 20 minutes later when that day’s lab results came back and showed that there were definitely blasts in my blood. At that point, the bone marrow aspirate wasn’t to determine whether or not there was disease, but to figure out how much and what it looked like (if it expresses certain proteins, there are more targeted treatment options). Getting this news is always devastating, but it’s especially devastating two weeks before I’m supposed to walk for graduation and leave for the road trip of a lifetime with my best friend. It’s especially devastating when I knew even before we discussed them that my options are increasingly limited. Most people don’t make it through standard treatment, two bone marrow transplants, and two experimental therapies with an otherwise healthy body that can still handle more treatment. My situation is so unique that the data is only so useful in choosing a path forward. I also knew that, if the leukemia has spilled out from the bone marrow into the blood, there’s already a lot of it. We hadn’t caught it as early as my last few relapses because we’ve spent the last month thinking it was a virus. My doctor called the next day and confirmed that my bone marrow has a lot of disease (about 75%) so we should start treatment as soon as possible, they were thinking I should come in the next day. I froze – I had a banquet the next night and three final papers/presentations due the following Monday through Wednesday. I said I needed a little time to process and make sure I could sort out my school stuff. We settled on admission Saturday so that I could go to the banquet first, and my professors were understanding as I expected. Before heading to Philadelphia on Friday, I went to clinic for labs to make sure everything was stable. They threw in some other tests like an ECHO and I signed consents for multiple treatment options. The ideal option is a drug called Inotuzamab which targets a protein expressed on leukemia. They’re hoping that can reduce my disease while I wait for the RESOLVE trail I was already planning to do this summer. Inotuzamab is currently in phase three trials, soon to be FDA approved, but currently can only be acquired through a trial or directly from the company for “compassionate use.” During this clinic appointment, I found out that I would be getting admitted on Saturday so that I could get IV fluids all weekend and I said I was absolutely not going to be inpatient just for fluids. I requested a drinking goal and IV fluids at home if necessary. By the time I got home from my appointment, I was driving to Philly at rush hour but I was determined to go to this banquet because it was a dinner cruise I’d been looking forward to for weeks and one last normal thing before I started all this again. After brunch on Saturday, I drove home so I could have my port accessed for IV fluids overnight. When people have a lot of disease like I do, it can start breaking down and this process can be tough on the kidneys. However, I’m drinking three liters a day, getting a liter IV, and taking medication to help the kidneys so my numbers are actually abnormally low. On Monday morning, I realized I had no idea how long of a hospital stay I should be packing for. I emailed my doctor and he told me to prepare for two weeks, maybe longer. I got to clinic a few hours later and my nurse mentioned giving me fluids and sending me home. My doctors decided they really wanted to do the Inotuzamab instead of some of the more chemo-heavy options, and they didn’t have the drug yet. The rest of my labs were stable, so I went home with plans to return the next day (Tuesday) for a spinal tap and Wednesday for admission. I’ve never had any disease in my spinal fluid, but they needed to double check because CNS disease would disqualify me from the Inotuzamab. Spinal taps aren’t too bad, but the one time I didn’t have Versed, the procedure did not go well. I had a lower dose of Versed than for my bone marrow test, but it knocked me out. In addition to taking some spinal fluid for testing, they put some chemo in my spinal fluid just to make sure no disease pops up there. It wasn’t the usual methotrexate because there’s a shortage, and this other drug made me feel awful. I slept for most of the rest of the day. I was asleep for this conversation, but when we left Hopkins on Tuesday the plan was basically that we’d get a call or email when there was a plan. When I woke up yesterday (Wednesday) to no sign of a plan or getting admitted that day after all, I was extremely frustrated. I understand that my doctors are doing what they can and that they don’t have control over when the drug arrives, but it would’ve been nice to hear a more certain “no, you don’t need to come in today.” I had two big things happening at school that I easily could have driven up for if I hadn’t been sitting at home waiting for an appointment. Missing things for treatment is absolutely understandable and I’ve learned to accept that over the last four years. Missing things so I can sit at home waiting for a phone call about the plan? Absolutely infuriating. The drug doesn’t magically transport itself, so I know there’s a certain amount of lead time. If you don’t know when you’re going to get it, just tell me that. I could’ve gotten to Hopkins from Philly in only about an hour longer than it would take to get there from home. My day got better thought because I got to see some friends and go to my first Orioles game! It was a beautiful night and a crazy game, so that was a great experience! And of course it was nice to have a completely hospital-free day. However, since I wasn’t getting a liter of IV fluids, I worked hard to drink enough to make up for it – I was only half a cup shy of 4 liters! I got an email last night saying that I officially qualified for Inotuzamab and they were hoping to get it by today. I would probably need to go to clinic and would be admitted from there, but my doctor would confirm with me later. I figured the baseball game was a great last night before the hospital and I was ready to get started. When I woke up this morning without any confirmation or scheduled appointments (we can see them in an app), I was very confused. I sent another email and found out the drug wouldn’t be arriving today, so I needed to go to clinic but as long as my counts were still stable, I’d get IV fluids and go home. Sure enough, that’s what I did and I’m typing this from home. Even with an insane number of appointments, there have been plenty of fun things in the last two weeks and it’s really hard for me to believe my bone marrow is so full of leukemia. I’m finally getting a little more tired than usual, but I’ve gone for walks and felt fine. My appetite has been normal and I destroyed a huge burrito last weekend. I’ve been swimming, played board games, and worked on some of my final projects. After our banquet, I went out with some friends to a karaoke bar and didn’t go to sleep until about 2am. The title of this post is actually dedicated to the friends I was out with, who serenaded me with Survivor by Destiny’s Child. I’m not scheduled to finish my degrees until December, but I was planning to walk in the graduation ceremony this upcoming Monday. Three of my long-time best friends were coming from out of town for it, and I was really excited to introduce them to Philly and my friends at Drexel and build a celebratory castle cake. I have the most supportive friends ever so of course they will come wherever I am, even if that means we are making up our own graduation ceremony and building a castle cake in the hospital this weekend. The past week has been such a rollercoaster of emotions. I’m extremely frustrated, because back in March my doctors convinced me that I was at high risk of relapse and we needed to do something. Their original plan got shut down by adult oncology, which I still don’t understand, so we did nothing and I spent the last few months worrying and, surprise surprise, here I am again. I’m sad to be missing so many of the senior activities I worked so hard for, and even more devastated to cancel my cross-country road trip. I’m glad there are still options and that my team is trying to pick the best one, and I’m more thankful than ever for my super supportive friends, family and professors. Most of all, I’m just tired of this and ready to have more than a few months of normalcy at a time and I’m prepared to keep fighting to get there. As always, thanks for your thoughts, prayers, and entertainment suggestions! I’ll post again soon when I get a better idea of the plan. Yes, the current plan is admission tomorrow, but I’ve thought that five other times this week and I’m still home… |
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
Categories |