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
Dede
6/15/2017 01:21:19 pm
Karen -- If I could think of all the adjectives that have a meaning better than astounding, I would be using all of them here. Your accomplishments are phenomenal. Who does that -- two degrees at the same time! And summa cum laude through all that you have been through, omg, what a bright and shining star you are! I am so sorry we were not there for you, but believe me, we were thinking about you. Hope you can feel the love, Karen, we are so proud of you in so many ways too numerous to mention. We hope that long awaited medicine will be the miracle we are praying for. Love, peace and strength to you and your family.
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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
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