Hey everyone! I know it’s been a while since my last post. Now it’s day 54 – I’m more than halfway through my 100 days! My classes started less than a week after my departure from Hotel Hopkins so homework has been keeping me busy. Now that nearly everyone is back at school and visitors have slowed down, I should have a little more free time. Plus now I’ve actually got some news and stories to share but I’ll try to condense everything so it doesn’t take all day to read. Fun fact: the word document I keep all of these posts in (without pictures) is over 50 pages and about 35,000 words. Thanks for reading all of that! Classes started January 6th (yes, Drexel starts early after winter break. It’s a quarter system thing). I was signed up for four classes but realistically 12 credits wasn’t going to work with everything that’s going on. My Criminal Justice class would have filled a requirement that I’d rather fill with a different class, and the due dates were very inflexible. My other classes have everything due by Sunday night which is a lot better. Also, her syllabus was FULL of typos. I dropped it the next day and nine credits are much more manageable. I’m taking two communication classes and cognitive psychology so I have a lot of reading and online discussion posts but nothing I haven’t been able to handle so far. My next issue is dealing with co-op. As a Drexel student I’m supposed to have six months of work experience from March-September but I need something flexible with all of my appointments/potential inpatient stays if I get a fever. I also need to petition Drexel to let me have a co-op even though I’m not currently a full time student and didn’t take any classes fall quarter. It’s going to be a process but we’ll see how it goes. Even if I can’t do an official co-op, I am confident that I will find something to keep myself occupied, whether I take classes or volunteer with some of my favorite organizations. As I mentioned in my last post, I went to the aquarium only to find out that it’s not recommended by the doctors because of the germs. I had been there on an uncrowded day, wore a mask and used a lot of hand sanitizer so everything worked out just fine. A few days later I went sledding. Patterson Park has a pretty good hill! Sledding is an acceptable activity, as it turns out, despite the trees, metal posts and other obstacles on the hill. I have platelets, it was exercise, and it wasn’t as germy as the aquarium. It was a lot of fun but walking back up the hill was pretty exhausting so I mostly just watched my siblings and the parents sending kids who wouldn't have known to stop for a tree down the hill screaming. It was so nice to be out in the snow! Despite the rules (some of which we decided are more like recommendations), we also went to the science center to check out the mummy exhibit. My mom’s friends wanted to go and I decided it sounded sort of interesting. It was actually incredibly fascinating. Some of them have so much more hair than I do which was amusing. The stories about the people, the research they’ve been able to do about things such as tuberculosis just from the mummies, and the incredible preserved condition these people were in were all completely mind-boggling to think about. Again, I wore my mask and didn’t touch anything and managed to escape fever-free again. We just didn’t mention this outing in clinic. After I got my transplant, I got a binder full of the rules and guidelines for after I left the hospital. I never read it because the rules they told me sounded pretty similar to the rules I’ve been hearing since August but my mom picked it up one night and discovered it was full of errors. We sat down one night with a bright pen and marked up the whole thing. Some sections were okay but some were terrible. There were inconsistencies about important stuff such as what temperature counts as a fever, typos such as “heap filters” instead of “HEPA filters” and sentences that just didn’t make any sense. We took the binder to clinic and my doctor took it to the staff meeting. Everyone was horrified, not only by how many mistakes there were but also that nobody had ever mentioned them in all the years they’ve been handing out this binder. One of the doctors suggested putting me on a committee. I haven’t heard any more about that but if I do, I will definitely include it in a future update. Along with all the fun stuff, I’ve also got medical updates. Most recently (actually, this afternoon), I found out that my Hickman is scheduled to be removed on Tuesday! I can’t wait to take a normal shower and not worry about getting the dressing wet. Tuesday will be day 60, so I’ll also be getting another bone marrow aspirate to see if there’s any of me left. We got the day 30 results a few weeks ago: “no evidence of patient.” Sounds weird, but that means they only saw my sister’s bone marrow which is the best news we could have hoped for! We heard that frequently the day 30 results say “greater than 95% donor” which is good but they were much happier with “no evidence of patient.” Don’t worry though, I’m still here! All that changed was my mutation-prone bone marrow. Of course, not everything can go smoothly because that just wouldn’t be fair, right? Last week was one of the roughest points of this entire treatment. I still have not caught up on acknowledging the care packages I received or responding to all of the messages people have sent me, but please don’t think I’m unappreciative/ignoring you! Anyway, I got a spinal tap on Tuesday (the 21st) and slept all day from the Versed. I was awake for less than seven hours, which includes the time I was awake in the morning before I even went to clinic. It was already snowing when I got up and clinic was packed with people hoping to get everything done in the morning before the storm got bad, even if they had afternoon appointments. That was the third of my five spinal taps to make extra super sure that nothing bad is hiding in my spinal fluid. They’ve never seen signs of anything bad there but better safe than sorry. Starting 24 hours after the tap, I take a medicine every six hours (yay middle of the night meds) to make the chemo in the spinal tap stop working. On Wednesday, I had a pretty bad headache. I get a lot of headaches so it didn’t bother me much at first but it kept getting worse. It was still there when I woke up on Thursday and halfway through the day if I sat up in bed I threw up. If I stood up to go to the bathroom I threw up. After I ate anything, I had to stay in the same position for a few hours to let the food digest so I didn’t lose it all. My head hurt worse than a migraine and I couldn’t do anything but try to sleep. On Friday, it was a little better when I went to clinic in the morning and I managed to eat three meals but I still didn’t feel great. My counts were really high – ANC in the upper part of the normal range! This was exciting, even though of course it doesn’t mean I actually have the immunity of a normal person because I’m nowhere close to that. However, a spike in white blood cells can also mean the body is fighting an infection. I didn’t have a fever though so I headed home. At 6am on Saturday morning, I woke up and was really thirsty so I got a glass of water and decided to check my temperature because that’s really unusual for me. It was 99.5 which isn’t great but not a fever so I went back to sleep. My dad woke me up an hour later to give me leucovorin (to stop the spinal tap chemo) and said I felt warm so I checked again. The thermometer had been sitting in my freezing cold windowsill for the past hour and my temperature read 100.9. Fever. I threw my textbooks, laptop and a few clothes in my backpack and we were off to Hopkins. Thanks to the 20 minute radius we were there really quickly and there was no wait for a room in the ER. However, my temperature was back in the 99s, no longer a fever. Personally, I think the windowsill had something to do with this. I’m not sure why I have to live so close since it took them hours to start antibiotics. If infections are such a big deal, is my family history of various cancers really so important that it has to be documented before we can start anything? And isn’t that in the computer from every other ER visit? Also, the nurses had to draw blood cultures (20cc for each of my three lumens) but they couldn’t get one of the caps off my Hickman. It took over half an hour. None of their tricks were working and eventually they called a nurse down from the 11th floor and she got the cap off with some tricks they’d never heard of. Oncology nurses really are the best! My headache was back so all I wanted to do was turn off the lights and sleep. However, whenever they start a new antibiotic, they monitor temperature and blood pressure every 15 minutes for at least an hour. Who needs sleep? My blood pressure normally runs low, and antibiotics can make it drop, so even before they could start the nurse had to keep checking my pressure until she got something acceptably high. After about five hours in the ER, we headed upstairs. I spent the rest of the afternoon with a family friend while both of my parents went to my sister’s lego robot competition. Her team is heading to states! My headache only got worse throughout the day. When my dad left, I had given him a list of food to bring in from the apartment that we hadn’t grabbed in our 7am rush but by the time he got back there was no way I was eating. I threw up every piece of cereal and even every sip of ginger ale so the doctors prescribed a new headache concoction that knocked me out before I could tell if it helped. On Sunday, I still had a headache. I was also incredibly stressed because I had only completed the work for one of my three classes thanks to all of the headaches. With a lot of stretching and back massages, I felt a bit better. A family I know from volleyball and haven’t seen in a while came to visit which was a lot of fun and I even managed to enjoy some of the desserts they brought me. I was able to finish one other class and I had already asked for an extension for the third. I tried to eat something other than junk food but it made me incredibly nauseous so I lay down for a little bit. I was getting the same headache concoction as the night before and it put me to sleep before I could eat anything. At 4am, my nurse took my temperature and it read a high fever. I was shocked, because it was the first time in almost a week that I didn’t have a headache. I felt pretty great. I took off my heavy pile of blankets (I sleep with a LOT of blankets) and asked her to check again. Now it was in the 99s again. She checked again, best two out of three, and still no fever. Four out of five, still no fever. The resident said to check again in half an hour. Two more tries and again, no fever. They decided not to count it which meant I got to leave that day (Monday). Now I am happily back at the apartment. My stomach didn’t feel great Monday afternoon so I didn’t eat much but I’ve started focusing on drinking my calories. I used to pretty much only drink water and milk but now that milk tastes weird from the chemo I’ve stuck with water since August. Now I’ve got hot chocolate, root beer, lemonade, ensure, and a few other options to stop the steady downward trend of my weight. My BMI is officially underweight and it’s just not healthy. On Monday night, my head felt warm and I checked my temperature. Each time I checked it, within 5 minutes of each other, the readings were drastically different. I don’t know why I have this effect on thermometers. Maybe it happens to other people too, but they don’t check multiple times so they don’t know? I have no idea, but it’s incredibly frustrating when a fever means an automatic 48+ hours of hospitalization. I didn’t want to go right back and my temperatures were eventually pretty consistently in the 99s so I just went to sleep. Every time my mom woke up during the night, she’d come feel my forehead. It was a pretty sleepless night. I spent all of Tuesday checking my temperature every hour. It was pretty steady all day, in the 99s. I finally felt pretty good, met my calorie goal for the week and got a lot of homework done. The internet stopped working in the middle of my online test, but my mom found out where the key to the room with the router is and reset it for me. It kept going off again but her final reset worked less than thirty seconds before the end of my test, allowing the second half of my answers to save and submit successfully. That was the most stressful test I’ve taken in a while, and it wasn’t even the subject matter that was the problem! Apartment life continues to be so much better than hospital life. We have lots of board games plus our wii in here and I’ve had lots of awesome visitors, from family to school friends to family friends to my friends’ awesome parents. I’ve worked on jigsaw puzzles of every shape and size, gotten a tour of the area, sampled more of the restaurants, and gotten carry-out menus from every restaurant around the Canton Square. Although it’s nice to have all the menus, the most noteworthy part of that experience was the guy who didn’t have a carry-out menu so he took all the pages out of one of the normal menu books and handed them to us. Props for fast thinking. Since our apartment is part of Believe in Tomorrow, we can go to the Believe in Tomorrow House at Hopkins where they serve dinner almost every night. We don’t usually go but we went for one of the pizza nights. Afterward, we hung out in the basement, which is any kid’s dream – there’s every game system you can imagine, multiple TVs and computers, foosball, air hockey, pool, and this awesome firehouse thing with a slide. I’m a little big for the slide. There’s a gorgeous waterfront path that we can walk to and then walk along until I get tired. It goes all the way to the inner harbor but that’s about seven miles and I don’t have that much energy or tolerance for the cold. The sunset views are gorgeous and there are some entertaining boat names, such as Hopium. There are also lots of entertaining people, including the person running barefoot on a rather chilly day and the person pushing her dog in a stroller. Anyway, I think that’s about all the updates and fun stories I have other than my hair is starting to grow again! It looks pretty blond at the moment but it’s too early to tell what’s going to happen. I always think of some random update ten minutes after I post the link on facebook, but I know by the time I add another paragraph a lot of people will already have read it. I need to write a big note to remind myself that if I updated this more often, it wouldn’t take so long and I wouldn’t accidentally leave stuff out. One thing I left out last time was a tour of the apartment, so I promised to include some pictures in this post.I left out the bathroom and the hallway since those didn't really seem necessary. As always, thank you, thank you, thank you to everyone who has been so supportive of me and my family. Positive thoughts, prayers, visits, care packages, messages, words with friends games, entries to my countdown chain, phone calls, meals, random other food and anything else you do is appreciated. Also, a special thank you to the anonymous person who paid for some of our housing; I hope you are reading this so you know how truly generous you are and that we understand anonymity but wish we could thank you more personally in some way. The support we have received from so many people amazes me every day. Even the nurses and doctors know we are surrounded by awesome people. I’ve lost count of how many times they’ve mentioned that we have so many supportive friends. I love you all and hope 2014 is off to a good start!
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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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